Download PDF. - Macmillan Cancer Support

For Macmillan professionals 

Issue 58 

Autumn 2011 

Kate Patience 

talks about a new exercise 

programme for people 

with cancer 

In focus 

Relationships and 

sexuality 

Sharing good practice 

Treatment Summary: a tool to improve 

communication between cancer services 

and primary care

Contents 

Perspective 

We welcome 

feedback 

You can let us know your views 

about Mac Voice. Simply email 

macvoice@macmillan.org.uk 

or call 020 7091 2219 

Writers wanted 

Mac Voice is for you. You can write about the 

issues that matter to you and share your 

knowledge with other Macmillan professionals. 

All you have to do is email 

rcotter@macmillan.org.uk 

or call 020 7091 2219 

Contributors 

Anne Armstrong • Darja Brandenburg 

Mary Dowglass • Becky Land • Sue Lennon 

John McPhee • Sue Parkes • Kate Patience 

Lisa Punt • Jodie Reynolds • Slafka Scragg 

Editorial board 

Charlotte Argyle, Carers Support Manager • 

Kathy Blythe, Macmillan Development 

Manager • Colin Cosgrove, Editorial 

Manager • Alison Foster, Macmillan Clinical 

Nurse Manager & Lead Clinician for Specialist 

Palliative Care • Alison Hill, Nurse Director, 

South West London Cancer Network • Sue 

Hills, Professionals Engagement Manager • 

Beverly Hurst, Macmillan Gynaecology/ 

Oncology CNS • Yvonne McKenna, Macmillan 

Lead Cancer Nurse • Barry McVeigh, 

Macmillan Development Manager • Eileen 

Mullen, User representative • Heather Nicklin, 

Macmillan Specialist Palliative Care Social 

Worker • Terry Priestman, Consultant Clinical 

Oncologist • Debbie Provan, Macmillan 

Project Lead Dietitian • Kirsty Warwick, 

Communications Manager • Tracy Williams, 

Senior Information Development Nurse 

Editorial team 

Rosie Cotter • Sajjad Shah 

Genevieve Osei-Kuffuor 

News 

4–11 The latest from Macmillan, including a new financial 

service for people affected by cancer, details of the 

Macmillan professionals’ events and a professional’s 

experience of writing a book about women’s cancers 

Q&A 

12–13 Kate Patience, Macmillan Allied Health Professional 

Lead, tells Mac Voice about a new exercise 

programme for people living with cancer 

Features 

14 Rolling out 23-hour ambulatory care 

15 Piloting new support services 

16–17 Providing care with confidence 

18 Treating the effects of lymphoedema 

Sharing good practice pull-out 

Treatment Summary: a tool to improve communication 

between cancer services and primary care 

In focus: Relationships and sexuality 

19–27 This section brings together some of the specialist 

work being done by Macmillan professionals to 

help people with cancer cope with sexual and 

relationship issues 

Resources 

28 Free Macmillan resources to help you support your 

patients during Breast Cancer Awareness Month 

Further information 

Darja Brandenburg 

Macmillan Clinical 

Psychologist, Cancer 

Service, Good Hope 

Hospital, Clinical 

Psychologist for HIV, 

Dept of Sexual Health 

and HIV Medicine, 

Heartlands Hospital 

References 

1 

Gianotten W. 

Mechanisms of Sexual 

Morbidity. Conference 

paper. 2008. ISSC 

Conference, Glasgow. 

Sexuality and 

cancer 

Sexual issues are among the most common and 

long-lasting side effects of cancer and its treatment. 

They will affect between 35 and 50% [1] of people living 

with cancer, with significantly higher figures reported 

for certain cancer types and treatments 

It’s frustrating, but perhaps not 

surprising that this aspect of care has 

remained one of the most neglected. 

Even as survivorship needs for people 

with cancer are being recognised – 

including work on the late effects of 

cancer treatments – commissioners and 

cancer managers have been reluctant 

to commit funding to what many may 

still perceive to be a dispensable luxury. 

Much of the work today is carried 

out by a relatively small group of 

enthusiastic clinicians, often working 

in isolation. There are a few notable 

exceptions, with exciting new service 

developments happening at The 

Christie, the Royal Marsden and 

Harrogate hospital, as well as some 

partnerships with Relate (see pages 

24–25). But at the same time, some 

longer-existing services are losing 

support and funding as trusts battle 

with severe cost saving targets. 

The good news is that the vast majority 

of patients don’t require access to 

specialist services to help address 

their sexual concerns. It has long been 

established that even brief supportive 

conversations and giving simple 

recommendations can go a long way 

towards alleviating distress for most 

patients and their partners. 

You can read more about these 

issues and how you may be able to 

support people affected by cancer in 

this way on pages 19–27. Macmillan 

also has a sexual relationships toolkit 

for professionals. You can access it at 

macmillan.org.uk/learnzone 


Macmillan Clinical Psychologist 

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. 

© Macmillan Cancer Support, registered charity in 

England and Wales (261017), Scotland (SC039907) 

and the Isle of Man (604). MAC5772_09_11 

We support each other 

Macmillan’s Online Community offers a safe environment 

for people to share their cancer experiences with others. 

Visit macmillan.org.uk/community 

Printed on recycled paper – please recycle 

2 Mac Voice Autumn 2011 

Autumn 2011 Mac Voice 3

News 

In brief 

Talented professionals pen reference book 

There is a well-known phrase that 

goes ‘there’s a book in each one 

of us’. Alison Keen shares how this 

became a reality for herself and 

colleague Elaine Lennan. 

‘When I began working as a 

gynaecology clinical nurse specialist, 

I kept looking for the ideal reference 

book that told me everything I needed 

to know – but I had to look things 

up in a variety of sources. Then one 

day, many years later, my friend and 

colleague Elaine Lennan, Consultant 

Chemotherapy Nurse, suggested that 

we write a book together about breast 

and gynaecological cancers.’ 

‘Elaine had just written her first 

chapter for a text book. She thought 

that it would be good to just “have a 

go” at producing a whole text book.’ 

‘We began by writing an initial 

chapter outline, working out our 

readership and establishing the book’s 

aims. We then contacted a publishing 

company, which was enthusiastic about 

the book and met with us to firm up the 

plans. They explained the contractual 

process, and with minor modifications 

and some helpful guidance, work 

began.’ 

The book, titled Women’s 

Cancers, includes information about 

epidemiology, histopathology, staging, 

genetic predisposition, sexual function, 

fertility, treatment and management, 

survivorship, and palliative care. 

‘We approached experts in the field, 

and as we’ve both worked in cancer 

care for many years, it was fairly easy 

to find colleagues to contribute. They 

certainly wouldn’t be doing it for the 

money at £50 per chapter, but we 

hoped that they would be tempted by 

the kudos of having a chapter in a text 

book, liked us enough to say yes, or 

be too polite to refuse. Everyone we 

approached agreed to write.’ 

‘We produced the chapter outlines, 

but left each author to develop their 

own chapters. We were very clear that 

the emphasis should be about the 

experience of cancer. Some authors 

asked patients to provide narrative and 

Elaine and I also used our privileged 

clinical roles to obtain commentary. 

We are extremely pleased and grateful 

for the patient contributions and feel 

that these give the book real meaning.’ 

‘Deadlines were set and eventually 

a steady trickle of chapters came in. 

We showed a few sample chapters to 

the publisher, who gave guidance on 

formatting and consistency. We then 

began the task of editing. The process 

was lengthy, spanning over two years, 

but we never lost sight of our aim and 

are thrilled with the finished product.’ 

‘We would like to thank the authors 

for their expertise and time, but mostly 

of course, our thanks go to those 

affected by cancer whose resolve and 

determination remains an inspiration.’ 

More information 

Contact Alison Keen, 

Interim Head of Cancer Nursing on 

023 8079 4520 or alison.keen@ 

suht.swest.nhs.uk 

Encourage your patients to get active 

You may have noticed that there 

have been lots of articles in nursing, 

oncology, GP and mainstream press 

recently about the benefits of being 

physically active during and after 

cancer treatment. 

Evidence now clearly shows that 

being physically active during and after 

cancer is linked with improved physical 

and psychological well-being; reduced 

late and long-term effects of treatment; 

reduced risk of recurrence and 

co-morbidities; and improved overall 

survival rates. To read the evidence 

visit macmillan.org.uk/movemore 

We also have a guide and some 

pedometers to help your patients 

get started. To order these, visit 

be.macmillan.org.uk 

See pages 12–13 to read more 

about helping your patients get active. 


Contact Jo Foster, Physical Activity 

Project Manager, at jfoster@macmillan. 

org.uk or call 020 7091 2094. 

Award-winning nursing 

‘Tracey goes “the extra 

mile” to put patients 

and relatives at the 

centre of her thinking’ 

Tracey Coyne, Macmillan Clinical 

Nurse Specialist in Palliative Care, 

said she was ‘extremely delighted 

and thrilled’ after her colleagues 

at Newham University Trust voted 

her their Nurse of the Year. 

The award was handed out 

at the sixth annual Nursing and 

Midwifery Celebration on 12 May – 

International Nurses Day. 

Tracey said, ‘It’s wonderful to be 

recognised by my colleagues, and 

that a clinical nurse specialist within 

palliative care has received this 

award.’ 

At the ceremony, the audience 

heard that Tracey goes ‘the extra 

mile’ to put patients and relatives 

at the centre of her thinking. This 

included regularly calling people 

at home to find out how they were 

coping. She was also commended 

for being a good role model for 

other nurses. 

Professionals’ events 

Hear from inspiring speakers and network with colleagues at this 

year’s UK-wide Macmillan professionals’ event – ‘The changing 

story of cancer, transforming systems, meeting needs’. The event 

is open to all Macmillan professionals and runs from 10–11 

November at Heathrow. 

Macmillan is also running two additional events for Macmillan 

information professionals in London and Manchester. Both events will 

focus on sustainability and demonstrating the value of your service, 

but each will have a local slant. These events take place from 24–25 

November (London) and 30 November–1 December (Manchester). 

This year, Macmillan will be trialling a new expenses policy that will 

cover travel costs for professionals attending any of these events. 

Visit macmillan.org.uk/learnzone to view the programme, 

register, and for full details of the expenses policy. If you have any 

queries, please email professionalsevent@macmillan.org.uk 

46 

Number of Macmillan Quality 

Environment Mark (MQEM) awards 

given to cancer care environments 

across the UK to date. 

To apply for the MQEM or to find out 

how we can support your application, 

email vnoble@macmillan.org.uk or 

call 020 7840 4769. 

100 

This year, Macmillan is proud to 

celebrate its centenary. To mark this 

monumental occasion we’re holding 

a special evening of entertainment 

at the London Palladium on 28 

November. It will be hosted by 

Graham Norton and feature stars 

from stage and screen. 

A group of Macmillan professionals 

will be forming a dance troupe to 

perform on the night. To buy a ticket, 

call 020 7840 4747 or visit 

macmillan.org.uk/centenarygala 

Learn Zone 

Macmillan’s Learn Zone has a handy 

user guide to help you navigate 

through the site. Simply follow the 

link under the ‘main menu’ on the 

home page. 

Learn Zone has lots of useful 

resources for professionals, including 

e-programmes, toolkits 

and career development tools. 

Visit macmillan.org.uk/learnzone 

4 Mac Voice Autumn 2011 Autumn 2011 Mac Voice 5

News 

News 

September 

World’s Biggest Coffee Morning, 

30 September 

www.macmillan.org.uk/coffee 

October 

Breast Cancer Awareness Month 

www.breastcancercare.org.uk 

Parliamentary events help 

raise the profile of carers 

Monitoring the Cancer Drugs Fund 

The interim Cancer Drugs Fund of £50 million 

began in October 2010 and an annual fund of 

£200 million came into effect in April this year. 

The aim of the fund is to give people with 

cancer in England greater opportunity to access 

drugs prescribed by their specialist. This is 

particularly important for people with rarer 

cancers, who have historically lost out when 

accessing costly drugs within the NHS. 

More than 2,000 people have received 

drugs funded through the fund. Macmillan 

fully supports the objectives of the fund, but is 

concerned that there is considerable variation 

in the number of applications to the fund and 

uneven level of expenditure across regions. 

The fund is allocated across the 10 Strategic 

Health Authorities (SHAs) in England. 

Within each SHA, a clinical panel decides which 

cancer drugs should be available through the 

fund. Most of the SHAs have made a priority 

list of drugs that they will pay for out of the 

fund. However, clinicians still need to explore all 

current NHS funding processes before applying 

to the fund. 

Macmillan is researching the operation of the 

fund. If you would like to provide feedback about 

your experience of the fund, please contact Clare 

Finlayson, Policy Analyst, on 020 7840 4686 

or email cfinlayson@macmillan.org.uk 

by 19 September. 

Macmillan has also produced a leaflet 

about the Cancer Drugs Fund for patients. 

Visit be.macmillan.org.uk or call 0800 500 800 

to order. 

2,000 

Number of 

people that have 

received drugs 

through the 

Cancer Drugs 

Fund to date 

November 

Lung Cancer Awareness Month 

www.macmillan.org.uk/ 

cancerinformation 

Macmillan professionals’ event, 

Heathrow (10–11 Nov) 

Macmillan information 

professionals’ events, London 

(24–25 Nov) and Manchester 

(30 Nov–1 Dec) 

www.macmillan.org.uk/learnzone 

December 

Carers Rights Day 

2 December 

www.macmillan.org.uk/ 

carersrightsday 

Britain Against Cancer Conference, 

Westminster 

13 December 

www.appg-cancer.org.uk or 

email BAC@macmillan.org.uk 

Building support: carers and MPs at a speed networking event during Carers Week 

One of the key objectives 

for Carers Week is to raise 

awareness among MPs of the 

contribution that carers make and 

the issues they face. Macmillan 

and other national partners 

aim to build support from MPs 

and move carers’ issues up the 

political agenda. 

This year’s Carers Week 

included two successful 

parliamentary events. On 13 June 

a speed networking event was held 

at the House of Commons – a 

repeat of last year’s event for new 

MPs. Charlotte Argyle, Carers 

Support Manager, attended with 

two carers who have received 

support from Macmillan – Paula 

McEnaney and Annetta Bennett. 

Carers sat at tables hosted by the 

national partners, while the MPs 

circulated to meet them and find 

out more about their experiences 

and issues. Paula and Annetta did 

a fantastic job of raising awareness 

of the challenges that carers of 

people with cancer face, and 

what more could be done to 

support them. 

On 15 June, Macmillan staff 

members, and carers who have 

received support from Macmillan, 

attended a reception at Downing 

Street. This was a great opportunity 

to raise Macmillan’s profile as an 

organisation that supports carers, 

with David Cameron, MPs and 

leading carers’ organisations 

attending. A group of carers met 

the prime minister and one carer, 

Sara Challice, told him about the 

support that she and her husband 

received from Macmillan. 

The dates of Carers Week 2012 

will be in the next edition of Mac 

Voice along with details about how 

you can get involved. 

New financial support and 

guidance service launches 

Macmillan is developing a new 

service that aims to provide financial 

support and guidance to 100,000 

people living with cancer over the 

next three years. This service is 

being made available thanks to the 

support of the Royal Bank of Scotland 

Group (RBS). 

A pilot of the service will run in North 

Yorkshire and Glasgow this winter, 

and will provide free and independent 

financial guidance on matters such 

as insurance, financial planning, and 

pensions. This service will not provide 

financial advice as regulated by the 

Financial Services Authority. 

Ciarán Devane, Macmillan Chief 

Executive, says, ‘When you’re living 

with cancer, money worries can be as 

distressing as the illness itself. Building 

on our existing relationship with the 

RBS, we’re pleased to announce the 

development of this new service.’ 

Guidance and support will be 

available on the phone, online and 

through face-to-face services. This 

service complements Macmillan’s 

existing benefits advisory services, 

which in 2010, unlocked over £130m 

of financial gains. 

RBS is supporting the development 

and set up of this service. Together, 

RBS and Macmillan are committed 

to finding new ways to help people 

affected by cancer take control of 

their money – whoever they are, and 

wherever they live in the UK. 

‘Getting the right financial guidance 

and support really can mean the 

difference between a family that copes 

with a cancer diagnosis and one that 

does not,’ Ciarán says. 

Piloting the 

Macmillan 

organiser 

The Macmillan organiser aims to 

help people with cancer manage 

their condition and show them the 

ways Macmillan can help. 

The organiser is a plain green 

A5 folder that includes sections 

to document appointment times, 

treatments, symptoms and side 

effects, pain, moods and fatigue. 

A three-month pilot for the tool 

began across several regions in 

the UK in July. Results from the 

pilot and details of roll-out will be 

available from October. Testing of 

an online version is also underway. 

For more information, please 

contact Tasia Malinowski on 

020 7091 2093 or tmalinowski@ 

macmillan.org.uk 

6 Mac Voice Autumn 2011 Autumn 2011 Mac Voice 7

News 

News 

Extending our reach 

An independent evaluation of Macmillan’s information 

sessions in Boots UK stores highlights the success of 

the initiative and details how we can build on it 

Macmillan information professionals 

delivered sessions in over 100 Boots UK 

stores during Cancertalk Week in February. 

An evaluation of the sessions 

found a number of factors made for 

a successful visit. These included 

pre-session conversations between stores 

and information services, the type of store 

visited, the location of the stand, and the 

enthusiasm of both stores and services. 

Nearly two-thirds of the Macmillan 

professionals who took part in the sessions 

believed they addressed unmet needs of 

people visiting their stands. Queries ranged 

from people concerned about signs and 

symptoms, to survivorship issues, to carers 

wanting to support friends and family. 

One visitor said, ‘It gives you easier 

access – if I need to get in touch with 

Macmillan. Previously, I wouldn’t have 

known where to start.’ 

In particular, some of the information 

specialists’ skills were praised. One visitor 

to a session in Croydon said, ‘She created a 

private-like bubble around the conversation 

and I forgot where I was.’ 

The evaluation also found that the 

sessions increased the understanding and 

relationship between local Boots UK stores 

and information centres, which should 

help build links to signpost people to 

more support. 

Rowena Howell, Boots and Macmillan 

Partnership Services Manager, says, 

‘There’s a real alignment between Boots 

UK’s community pharmacy goals – to 

support those living with long-term 

conditions, provide information and advice 

and reduce health inequalities – and 

Macmillan’s work to improve the lives of 

people affected by cancer.’ 

‘What we realised was this was 

actually touching people’s lives, 

and our customers loved it’ 

Davina Harrison, Sales Manager, Boots 

The awareness week has also kicked 

off some exciting partnerships between 

local services and stores, with some now 

providing regular outreach sessions. 

81% of information specialists said they 

would consider going in store again, with 

many contributing ideas for improvements to 

help their sessions be more productive. 

Macmillan and Boots UK will be working 

with stores and services to develop a 

guidance pack based on these suggestions. 

If you’d like to know more about these 

activities or are interested in starting a 

relationship with your local Boots UK store, 

please call 020 7840 4091. 

What else has 

Macmillan 

been doing 

with Boots UK 

Boots UK launched a 

free carers pack during 

Carers Week this June 

and Macmillan helped 

to promote this to carers 

of people with cancer. 

The pack included 

information about 

support available from 

Macmillan, and people 

attending Macmillan 

Carers Week events 

were given vouchers to 

claim a pack from one 

of the 200 participating 

stores. Boots UK is also 

helping Macmillan 

promote the benefits 

of physical activity for 

people with cancer. 

81% 

of information 

specialists said they 

would consider going 

in store again 

Macmillan’s future direction 

Building cancer 

care teams for 

the future 

In the last edition of 

Mac Voice we outlined 

Macmillan’s future 

direction. Here, Workforce 

Programme Lead Mary 

Dowglass explains how 

Macmillan plans to develop 

the cancer workforce 

The story of Macmillan has at its 

centre, the introduction, development 

and expansion of the specialist nurse 

role. Over time, this role has been 

complemented by other professional 

roles to ensure the physical, emotional, 

social, financial and information needs 

of people affected by cancer are met. 

But cancer is changing, and we need a 

cancer workforce that meets the needs 

of this changing story. 

Scoping 

We want people living with cancer 

to be supported by a qualified team 

of practitioners that delivers effective 

interventions at the right time and in 

the right place. When we set out to 

develop our cancer workforce strategy, 

we had an aspiration to match the 

supply of Macmillan professionals 

to the needs of people affected by 

cancer. We undertook some detailed 

work based on new information about 

tumour groups and survival rates, 

and have based our plans on this. 

This scoping work showed that the 

main challenges for clinical leaders 

are integrating services, improving 

productivity and flexibility, and ensuring 

there is a supply of professionals 

aiming to specialise in cancer services. 

Recruitment and development 

Macmillan has an important role to 

play in recruiting the very best people 

into the cancer workforce; to ensure 

professionals are oriented to the new 

cancer story; and that professionals 

are able to work in an integrated 

team of the future. We will do this by 

supporting development opportunities, 

creating rotational placements for 

non-specialists into specialist services, 

and developing the new skills needed 

to work with advances in technology. 

Shaping of the team 

We mapped the workforce against 

the whole cancer pathway and 

realised that we needed to do more 

during rehabilitation and follow-up 

(monitoring) phases. We plan to build 

capacity and skills closer to people’s 

homes by developing the role of the 

practice nurse. This will be based on 

the same model as our GP facilitators 

and is an effective way of increasing 

the skills of non-specialists. The new 

roles are still at the trial stage, but as 

Dr Charles Campion-Smith, Macmillan 

GP Adviser, says, ‘This project will build 

on the success that practice nurses 

have already shown in managing other 

long-term illnesses, ensuring people 

affected by cancer are fully supported 

by their GP practices to manage their 

condition.’ 

We will also set up new posts 

focussed on care coordination to 

support people once their acute care is 

complete. This will free up time spent 

on administration so that professionals 

can devote more time to assessing, 

planning and supporting selfmanagement. 

By building these new roles into 

places where we are working with 

partners to redesign systems, we will 

be able to test the impact of the new 

teams and work with employers on 

the best use of different types of staff. 

An indicative role specification for 

the care coordination role has been 

developed and is now available. 

Responding to local needs 

We need to develop a flexible 

approach that isn’t rigid, but can 

identify and respond to mediumterm 

local needs and new models of 

care. You can contribute by telling us 

about your experience with new ways 

of working and by contacting your 

Macmillan Development Manager 

to explore scope for new roles. 

For more information, contact 

Mary on 020 7840 4940 or email 

mdowglass@macmillan.org.uk 



News 

National elections 

National elections 

News 

Political parties 

commit to better 

cancer care 

Macmillan’s Change Cancer Care Today 

campaign put cancer care firmly on the agenda 

at this year’s national elections – Communications 

Officer for Wales Becky Land explains 

We had huge successes following our election campaigns in 

Scotland, Wales and Northern Ireland. Political parties in Wales 

and Northern Ireland committed to many of our election calls, 

and we received strong support from parties in Scotland. 

In the run up to the elections in May, we wanted to show 

all the political parties why and how they could make a 

real difference to the lives of people affected by cancer. 

Working with professionals and people affected by cancer, 

we developed a number of key objectives aimed at improving 

cancer care in the three nations. See opposite for details. 

John Hartson, former international footballer, supported the campaign 

Scotland 

In Scotland, the campaign kicked 

off with a ‘party election broadcast’ 

style video featuring people affected 

by cancer. This resulted in extensive 

media coverage including the film 

being broadcast on Scottish TV. 

Our e-campaign also generated a 

very positive response from all the 

main parties, including the re-elected 

Health Minister Nicola Sturgeon 

MSP. Just as our campaign went 

into full swing in early April, the 

Scottish Government announced an 

additional £400,000 of funding for 

our benefit services in Scotland. 

Northern Ireland 

In Northern Ireland, the outgoing 

Executive added all Macmillan’s 

manifesto asks into the Cancer 

Services Framework, including 

making a commitment to offering 

benefits advice and access to a 

cancer nurse specialist. We also 

had a positive response from the 

parties. Our e-campaigners were 

busy sending a film of people 

affected by cancer to party health 

spokespeople and candidates in all 

18 constituencies. This resulted in 

our manifesto asks being included 

in four out of the five main party 

manifestos. 

Wales 

In Wales, there was strong support from all 

parties to Macmillan’s manifesto asks. A highprofile 

campaign saw blanket media coverage 

for the Change Cancer Care Today report. This, 

together with lobbying from e-campaigners, 

resulted in commitments from all four parties to 

some or all of our election calls. This includes a 

national cancer strategy, better information and 

support, regular assessments and support for 

people affected by cancer from a key worker. 

Campaigns round up 

Labour, who went on to win the election in Wales, 

committed to all four of our election calls and 

explicitly committed to working with Macmillan 

to implement them. The Liberal Democrats and 

Conservatives committed to a cancer plan for 

Wales, and Plaid Cymru committed to using a 

patient-centred approach, including one-to-one 

personal care from a key worker and advice from 

the moment of diagnosis. 

Elspeth Atkinson, Director Celtic Nations, 

said, ‘With the election of a majority SNP 

Government and commitments from the 

DUP and Sinn Fein, we are well placed in 

both Scotland and Northern Ireland to 

continue our work to ensure people with 

cancer have access to a cancer 

nurse specialist, information/ 

benefits advice and proper 

follow-up care.’ 

Joint working 

Macmillan is now working hard to build on these successes. 

We will be working with the governments to ensure their 

commitments translate into better care for people affected by 

cancer throughout Scotland, Wales and Northern Ireland. 


Visit macmillan.org.uk/changecancercare to 

find out more about the campaigns. Contact Becky Land 

on 01656 867969 or at bland@macmillan.org.uk 



Name 

Kate Patience 

Macmillan Allied Health 

Professional Lead for Essex 

Cancer Network 

Location 

Mid Essex Primary Care Trust 

In post 

One year 

Contact 

kate.patience@nhs.net 

07768 641739 

What does your role involve 

In a nutshell, I develop and promote 

cancer rehabilitation services and 

survivorship projects across the cancer 

network. This includes occupational 

therapy, lymphoedema, physiotherapy, 

speech and language therapy and 

dietetics. 

What is your clinical background 

I came from a specialist oncology 

physiotherapist role, mainly working 

in acute inpatient oncology. I currently 

work one day a week in an oncology 

outpatient service, which I set up to 

deal with musculoskeletal problems 

(mainly after surgery), as well as 

triaging patients for our exercise group. 

Can you tell Mac Voice about the 

new exercise group 

The exercise programme forms part 

of a wider survivorship programme 

in Colchester. The aim is to increase 

awareness of the importance of 

exercise for people with cancer and 

reduce the fear around it. 

The programme runs for 10 

weeks and anyone who has, or has 

had cancer in the past, can participate. 

Some people may be undergoing 

treatment, while others may be a 

few years out of treatment but having 

issues like fatigue or deconditioning 

(eg reduced function). 

Everyone is given an individualised 

programme and we have any on-site 

gym where they can exercise. Once 

the 10 weeks is over, participants 

can enter into a higher intensity 

programme, but most are encouraged 

to start exercising in the community. 

We support people to get back 

into exercising in the community 

and have agreements for reduced 

membership rates at the local pool 

and gym. 

The programme has been running 

for a year, but has really taken off in 

the last six months. I’ve spent a lot of 

time talking to patient support groups 

and partnership groups to raise the 

profile of the service and cancer 

rehabilitation in general. 

Evaluation for the programme is 

ongoing, but we want more people 

to complete the course to make the 

numbers more robust. 

What are the benefits of keeping 

a clinical element in your role 

I feel that this is vital for me so I know 

what the challenges are for staff and 

patients, and I can keep listening 

to their needs. With the changes 

happening in the NHS, it’s important 

to know exactly what the challenges 

are in order to help overcome them. 

What is your greatest success 

in the role 

This would be raising the profile of 

cancer rehabilitation. There’s still a 

lot to be done, but doctors, nurses and 

patients are now talking about it. 

Allied health professionals (AHPs) 

aren’t good at advertising themselves, 

but we have a lot to offer patients. 

With the coalition government 

emphasising patients take more 

responsibility for long-term conditions, 

the role of AHPs is vital. We support 

people to self-manage their health, 

improving the quality of life for patients 

regardless of the timescale. 

How would you like the role and 

service to develop 

Over the next year I’ll be looking at 

all the different tumour sites and what 

rehabilitation services are needed to 

fulfil the rehabilitation and survivorship 

agendas. This will involve training as 

the majority of cancer rehabilitation 

work is done by general or rotational 

‘The role of AHPs is 

vital. We support people 

to self-manage their 

health, improving the 

quality of life for patients 

regardless of the 

timescale’ 

staff that may not be aware of the 

full scope of cancer care. I would like 

all cancer multidisciplinary teams to 

consider rehabilitation as part of the 

patient pathway, which will take a lot of 

education and marketing of services. 

What is the best thing about being 

a Macmillan professional 

It feels like there’s an awful lot of 

support. For example, you have the 

website, the Learn Zone and lots of 

other resources to draw on. It feels like 

being part of a big team. People also 

see the branding and know who you 

are; if you’re part of Macmillan, people 

trust the brand and have trust in you. 

Who inspires you 

Professionally, other AHPs such as 

Jackie Turnpenney and Maureen 

Dowling (two of a long list) have been 

a huge inspiration, pushing the cancer 

rehabilitation agenda for years and 

developing guidelines and models. 

Personally, my Dad has always been 

my biggest inspiration. Despite being 

diagnosed with Alzheimer’s disease at 

a very young age, he continued to try 

to help others as best he could through 

voluntary work and counselling for as 

long as he was able. His selflessness 

and strength has been amazing. 

Related information 

You can read Macmillan’s impact 

document on allied health professionals 

at macmillan.org.uk/servicesimpact 

Sign up for one of our 

great sponsored walks or 

organise your own event 

Macmillan will support you by providing some hints and 

tips as well as materials to help promote your event. 

For more information and to register please visit 

macmillan.org.uk/walking or call 0845 673 0721 

(9.00am – 5.30pm, Monday to Friday). 



Feature Care pathways 

Survivorship Feature 


Louise Walker 

Local Improvement Lead, 

East Midlands Cancer 

Network 

01332 258086 

Louise.walker8@nhs.net 

‘The East 

Midlands Cancer 

Network’s vision 

is that women 

undergoing 

mastectomy 

and wide local 

excision are 

discharged as 

early as clinically 

appropriate’ 

Rolling out 23-hour 

ambulatory care 

Patient Information and Support Manager Anne Armstrong 

explains how East Midlands Cancer Network is redesigning 

the care pathway for breast surgery 

NHS Improvement has adopted 

23-hour ambulatory care for breast 

surgery and is piloting this with 

cancer networks, including East Midlands 

Cancer Network (EMCN). This is part of a 

wider drive by the Department of Health. 

EMCN’s vision is that women undergoing 

mastectomy and wide local excision (WLE) 

are discharged as early as clinically 

appropriate. This has an impact on length 

of stay, and we aim to reduce this to a 

maximum of three days for mastectomy 

patients and 23 hours (or day case) for 

WLE by December 2011. 

Staff engagement 

An event was held in February to bring 

together clinical staff working at each of 

the network’s Trusts to share best practice 

and to ask questions away from a clinical 

setting. The day was very successful, with 

engagement and representation from 

consultants, breast care nurses, ward sisters 

and physiotherapists. 

Progress within the Trusts 

All eight acute Trusts within the East Midlands 

are now involved in this project and have 

reduced the length of stay for mastectomy 

and WLE patients. Some Trusts are still at 

implementation stage and some already had 

23-hour arrangements in place. So the start 

point has not been level and quantitative 

data will be more meaningful in 12 months. 

At the Derby Hospitals NHS Foundation 

Trust, consultants tested a new pathway from 

October 2008–February 2009. The length 

of stay was reduced and has continued to 

improve since implementation. The Trust has 

now achieved the following outcomes: 

• The 23-hour stay model is now firmly 

embedded in Trust. 

• Results of a survey show patients are very 

happy with the new service. 

• The relationship between the Trust and 

community team has greatly improved. 

• Patients discharged after one night 

increased greatly and is now 70%. 

Activities at Burton Hospitals NHS 

Foundation Trust included: 

• having a breast care nurse attend the 

pre-operative assessment, reiterating 

the length of stay and giving patients a 

further opportunity to discuss their care 

• having a physiotherapist also attend 

the pre-operative assessment as well as 

making a post-operative visit on the ward 

• the review of nurse competencies to 

enable nurse-led discharge 

• the review of patient information. 

United Lincolnshire Hospitals have gone 

through their implementation phase and have: 

• engaged stakeholders, including patients 

• mapped and reviewed current pathways 

on three hospital sites 

• developed a localised network advice 

sheet for use 

• used a patient satisfaction survey 

to evaluate the service. 

Piloting new 

support services 

Building on existing services at The Mustard Tree Macmillan 

Centre, a new team have started a survivorship project supporting 

patients, families and carers living with and beyond cancer 

Those supporting people affected 

by cancer will acknowledge that 

providing information about 

cancer and its treatment is only part 

of what is needed. Support may span 

health and social care, and we need to 

look at innovative solutions within both 

the public and voluntary sectors. 

The Mustard Tree Macmillan Centre 

at Derriford Hospital in Plymouth is 

developing and enhancing support 

and information services by working 

more proactively with people living with 

and beyond cancer. 

We offer a friendly, informal 

space to talk, ask questions and 

share concerns. People can make 

appointments for specialist services, 

such as benefits advice and 

counselling, and we run support 

groups. We also host activities such 

as relaxation sessions and education 

and training, and are a beacon site 

for information prescriptions and 

Macmillan patient information packs. 

Over 15,000 people visit the service 

each year and we have outreach 

services in Kingsbridge and Tavistock in 

Devon, and Liskeard in Cornwall. 

Building on existing services 

Following a successful pilot project and 

submission of a robust business case in 

2009, Macmillan funded a small team 

to further develop the centre’s services 

with a focus on survivorship. 

The latest pilot focuses on a 

fundamental question: ‘How might 

we work with patients, their families 

and carers at the right time, in the right 

place, to make a useful and helpful 

difference to their health and wellbeing’ 

We want to work alongside 

patients to help them manage their 

cancer experience. 

What the pilot will offer 

The information and support that we 

are currently piloting includes: 

• A telephone action line and 

information database that focuses 

on solving problems, signposting 

and providing information. 

• One-to-one consultations where 

we work together with patients, 

families and their carers to help 

them make plans, decisions and 

choices to cope and manage well. 

• Comprehensive educational 


The Living With and 

Beyond Cancer 

Project team 

01752 431 467 

programmes that provide 

education at every opportunity, 

interaction and contact. 

Progress to date 

We are piloting the service with a small 

patient cohort in preparation for wider 

roll-out this autumn. This has involved 

working closely with clinical teams to 

ensure to the new services meet the 

needs of their patients and to identify 

any service gaps. Patients have given 

feedback through a short questionnaire 

and the centre’s user group has also 

given advice. 

Currently, the most challenging 

issues are pacing the service roll-out 

to ensure we can support demand 

and integrate into the health and 

social care community. Additionally, 

IT systems development and locating 

equipment fit for purpose is proving 

interesting. In the current NHS climate, 

getting additional staff with the right 

experience in place has taken time. 

We will continue to place the patient, 

their families and carers at the heart 

of all we do to ensure we never again 

hear the comment, ‘I wish I had known 

about these services earlier.’ 



Feature Education initiatives 

Education initiatives Feature 

Providing care with 

confidence 


Dr John McPhee 

Course Director 

J.McPhee@tees.ac.uk 

or 

Jill Banks Howe 

Principal Lecturer, 

End of Life Care, School 

of Health & Social Care, 

Teesside University 

g.banks-howe@tees.ac.uk 

References 

1 

Lloyd-Williams M 

and Carter Y. The need 

for palliative care to 

remain primary care 

focused. Family Practice. 

2002. 19: 219–220. 

2 

Royal College of General 

Practitioners. Curriculum 

Statement 12. January 

2010. 

3 

Watson M. Principles of 

palliative care. InnovAIT. 

2008; 1(4): 250–256. 

4 

Higginson I and Sen Gupta 

GJA. Place of care in 

advanced cancer. Journal 

Pall Med. 3:287-300. 

5 

Munday D and Dale 

J. Palliative care in the 

community. BMJ. 2007. 

334:809. 

6 

Jackson S and Stevenson 

C. Practical Palliative Care 

for General Practitioners 

– final report to Teesside 

University and Macmillan 

Cancer Relief. 2004. 

(Unpublished). 

GP Facilitators Dr John McPhee and Dr Neil Reynolds 

developed a successful online course to help GPs better 

manage palliative care symptoms 

Many GPs feel ill-prepared to deliver 

the end-of-life care strategy and 

all it implies. Yet it has often been 

stated that palliative care needs to remain 

primary care focused. [1] 

The Royal College of General 

Practitioners also commented that ‘whilst 

doctors need a good theoretical knowledge 

of cancer care, achieving good patient care 

needs real life experience too.’ [2] 

People dying of cancer are, of course, 

only part of the story. The average GP will 

have to deal with 15–20 predictable patient 

deaths a year, of whom only five are likely 

to have had cancer. [3] Many surveys have 

shown that patients spend most of the last 

year of their lives at home, and would 

prefer to die there if given the choice. [4,5] 

Identifying local needs 

A survey conducted over 10 years ago 

in Teesside identified a need for more 

accessible and affordable palliative care 

education for GPs. A year later, Macmillan 

funded a bursary scheme for a week’s 

clinical attachment to Butterwick Hospice in 

Stockton-on-Tees. The University Certificate 

in Professional Development followed 

in 2001 and is accredited by Teesside 

University. The Practical Palliative Care for 

General Practitioners course forms part of 

this certificate. 

Course content 

The aim of the course is to give clinicians 

greater confidence in managing palliative 

care symptoms by combining theory and 

‘This was a fantastic course, from 

which I learned a huge amount. 

It has positively impacted my 

care of palliative patients both 

during the course and ever since’ 

Student comment from a questionnaire 

in September 2010 

clinical experience. The students acquire new 

sets of knowledge and skills, for example 

from the Gold Standards Framework and 

the Liverpool Care Pathway. Each student is 

allocated a tutor (ie clinical nurse specialists, 

consultants or GPs) who keeps regular email 

contact throughout. We have found that a 

tutor employed for 3–4 hours per week can 

support 10 students. 

What was originally a postal system is 

now online and a Macmillan grant is used to 

meet the cost of tutors and course fees. The 

main cost to each doctor is the week of study 

leave for a hospice attachment. 

Why it has been successful 

The course has introduced GPs to local 

hospices where they’ve set up lasting 

relationships with specialist colleagues 

for future advice. Input from GP palliative 

care facilitators, local palliative medicine 

consultants, Teesside University, the cancer 

network and Macmillan has ensured we 

provide a high-quality course. Other 

successful elements include: 

• having personal tutor support 

• using a practical learning style 

• closely linking theory and practice 

• meeting the personal development plan 

needs of many GPs 

• ensuring value for money – the 

consistent financial support of Macmillan 

has reduced the cost to students. 

The material has also been used 

successfully in other parts of the UK and 

so far over 400 students, mostly GPs, have 

successfully completed the course. 

Evaluation 

An independent evaluation was carried 

out by two academic sociologists two 

years after the course began. This was to 

determine if the GPs who had completed 

the course were aware of it having 

changed their clinical practice. [6] 

The doctors surveyed reported 

increased levels of confidence, knowledge 

and skills in palliative care. Another 

formal evaluation will be completed 

this year, but an informal questionnaire 

in September 2010 gave very positive 

feedback from students over the previous 

two years. Comments included: 

• ‘This was a fantastic course, from which 

I learned a huge amount. It has positively 

impacted my care of palliative patients 

both during the course and ever since.’ 

• ‘I now know where to look things up 

and have good communication with 

hospice and Macmillan nurses locally. 

The week in hospice was particularly 

useful for networking.’ 

Going forward 

Many nurses working in palliative care, 

both as community and specialist nurses, 

now have prescribing skills. We plan to 

make this course more accessible to them 

in future. The course outcomes will be the 

same as they are for GPs. 

A number of other areas in the UK are 

running the course this year with their own 

funding arrangements. We are grateful for 

the continuing support of Macmillan. 

The average GP will have to 

deal with 15–20 predictable 

patient deaths a year, of 

whom only five are likely to 

have had cancer 

400 

Number of students, mostly 

GPs, who have successfully 

completed the course 

3 4 

One tutor employed for 

3–4 hours per week can 

support 10 students 



Feature 

Lymphoedema 


Jodie Reynolds 

Macmillan Advanced 

Practitioner 

Lymphoedema 

Rehabilitation 

Physiotherapist 

Lymphoedema Clinic, 

Singleton Hospital 

Jodie.Reynolds@ 

Wales.nhs.uk 

01792 285252 

Early detection and 

multimodality therapy 

have improved survival 

rates for head and neck 

cancers. But this has meant 

many people with head and 

neck cancer are at risk of 

secondary complications, 

such as lymphoedema. 

The effects of 

lymphoedema in the 

head and neck are not 

simply cosmetic – they 

can cause psychological 

distress and problems with 

communication, respiration, 

alimentation and movement. 

Staff at the lymphoedema 

clinic at Singleton Hospital 

in Swansea found that 

people with head and neck 

cancer who had swelling 

also had poor skin care, 

decreased range of 

movement in cervical spine 

and impaired shoulder 

movement. 

Treating the effects of 

lymphoedema 

Jodie Reynolds discusses the development of a lymphoedema 

rehabilitation scheme for people with head and neck cancer 

A winning formula 

The clinic had already 

established award-winning 

lymphoedema rehabilitation 

schemes for people with 

breast and gynaecological 

cancer, so we decided to 

set up a similar scheme for 

head and neck cancers. 

The scheme is for patients 

undergoing partial or full 

lymph node removal via 

neck dissection. Patients are 

referred by the head and 

neck multidisciplinary team, 

which I belong to. 

Patients are assessed 

pre-operatively and given 

advice on preventing 

lymphoedema, along 

with exercises and written 

information. We also record 

range of movement of 

cervical spine and upper 

limbs, along with pain, 

sensation and activity 

levels. The patients are 

then reviewed 4–6 weeks 

post-operatively to make 

sure the exercises are being 

performed correctly. 

At this assessment, we 

check range of movement, 

pain, sensation and status 

of the accessory nerve. We 

also teach patients how 

to manage scars and any 

swelling, good skin care, 

and simple lymphatic 

drainage. If no problems 

are found during this 

assessment, patients are 

reviewed approximately six 

months later and at one 

year after their surgery. 

They are then discharged if 

they have no clinical signs 

of lymphoedema, but are 

advised to contact the clinic 

directly if problems arise. 

Evaluation 

We have seen 26 patients to 

date. At the post-operative 

follow-up assessment, 82% 

of patients had limited 

range of movement, 24% 

had pain and 71% had 

swelling. These symptoms 

were managed accordingly. 

Of course these measures 

may change at the patient’s 

second follow-up. 

It was interesting to see 

the high percentages of 

limited range of movement 

and swelling. From these 

results, we contacted 

the lead outpatient 

physiotherapists and asked 

how many neck dissection 

patients they treated. The 

results were astonishing. 

The maximum treated were 

two, while the majority 

treated only one or none. 

This revealed a large 

unmet need that should 

be addressed through 

education and awareness. 

Feedback 

Since coming into post, 

speech and language 

therapists have commented 

on the improvement in 

their patients’ swallowing 

and speech since my early 

intervention, and I have 

had positive feedback from 

the ear, nose and throat 

consultants. 

Increased awareness 

Although lymphoedema is 

a significant complication of 

treatment for head and neck 

cancer, its presence in this 

population is generally under 

recognised and, in most 

cases, undertreated. The 

paucity of literature reflects 

this. Greater awareness 

through education is needed 

and we need to implement 

prevention schemes for this 

patient group. 


You can order 

Understanding 

lymphoedema at 

be.macmillan.org.uk 

In this section 

20–21 Let’s talk 

Dr Darja Brandenburg, Macmillan Clinical Psychologist 

22 Sexual changes 

Lisa Punt, Macmillan Consultant Radiographer in 

Gynaecological Oncology 

23 Difficult decisions 

Chris* shares his experience of having a radical 

prostatectomy 

24–25 Managing relationships after a cancer diagnosis 

Macmillan partners with Relate in Manchester 

and Wales 

26 Psychosexual therapy 

Sue Lennon, Macmillan Nurse Specialist and 

Psychosexual Therapist 

27 Sex, relationships and cancer resources 

18 Mac Voice Autumn 2011

Let’s talk 

Macmillan Clinical Psychologist Darja Brandenburg 

gives advice and tips to help professionals talk 

about sexuality with their patients 



Macmillan Clinical 

Psychologist, Cancer 

Service, Good Hope 

Hospital, Clinical 

Psychologist for 

HIV, Dept of Sexual 

Health and HIV Medicine, 

Heartlands Hospital 

darja.brandenburg@nhs.net 

Reference 

1 

Macmillan Cancer 

Support. Super survey 

of cancer patients. 

2008. 

70% 

The vast majority 

of patients (70% 

or more) can be 

helped by just one 

or two short therapy 

sessions 

Sexuality is one of our most sensitive and 

private topics – one that can make us feel 

very vulnerable, afraid of being judged 

or hurt, whether we are the person with a 

sexual concern or the professional asked 

to raise the issue. 

Research shows that the majority 

of people with cancer would like more 

information about how cancer and its 

treatments can affect sexual function. 

How many of us can go through our 

list of patients and agree that we would 

expect the majority of them to want more 

information around sexuality What 

percentage of your own case load would 

you guess would like more information 

In the vast majority of situations our 

guesses will be wrong. Irrespective of 

age, health, marital status or cultural 

background, humans are sexual 

beings throughout life and may require 

information to help them express their 

sexuality under changing circumstances. 

Even though the majority of people 

with cancer would like more information 

about sexual side effects and ways of 

overcoming them, many say they wouldn’t 

feel comfortable being the first to bring 

up the subject. The reasons for this are 

manifold. Patients say they’re not sure 

which professional they should speak 

or what words to use when describing 

their difficulties. People with cancer also 

say they fear offending the professional. 

They are concerned that they may be 

judged for worrying about something as 

‘insignificant’ as sexuality at their age 

or after having come through a lifethreatening 

illness. They think they may be 

seen as ungrateful after all the team has 

done to save their lives. 

This state of affairs would seem to put 

the responsibility of raising the topic of 

sexual problems firmly and squarely 

with healthcare providers. We have a 

responsibility to raise sexual concerns 

alongside any other known difficulties 

when discussing the side effects of cancer 

treatments. Despite the clear rationale 

that allows us to discuss bowel function 

and many other highly private bodily 

functions in the required detail, most 

professionals still struggle to make the 

discussion of sexual concerns a routine 

part of their conversations with patients. 

A recent Macmillan report found that 

only 30% [1] of people with cancer recall 

a healthcare professional ever having 

raised the topic during their cancer 

experience. The main reasons given by 

professionals are: 

• a lack of privacy 

• not being sure if this is part of our role 

• not knowing what we are supposed to 

do or say 

• not being sure if anything can be done 

• lack of training, confidence and support 

• worry about offending patients and 

making of assumptions 

• a lack of local facilities to refer on to 

when problems exceed our expertise. 

What we can do 

The good news is that we don’t all 

have to become sex therapists to help our 

patients move on. While we each have a 

role in ensuring that any treatment side 

effects experienced are identified and 

advice about management is given, 

honest self-reflection will help us 

decide how far our own involvement 

will go and encourage us to map out 

the professional networks around us. 

Annon provides a helpful model (see 

Figure 1) to conceptualise four different 

levels of psychosexual support, ranging 

from giving permission to raise sexual 

concerns to the final stage of intensive 

therapy required for a small number 

of complex cases. The majority of 

patients (70% or more) can be helped 

by just one or two short sessions giving 

information and specific suggestions. 

Providing a supportive environment 

It can be helpful to have posters or 

patient information materials on display 

and to include appropriate material 

in patient information packs. It’s very 

Figure 1 

important to mention the possibility of 

sexual difficulties when discussing the 

side effects of proposed treatments and 

gaining informed consent. At this early 

point, the majority of patients won’t be 

interested in an in-depth discussion of 

the topic, but having heard sexuality 

mentioned, the patient is more likely 

to bring up any concerns as they arise 

during later stages. It’s helpful to check 

in with patients occasionally and gently 

mention the topic again, for example, 

when enquiring about side effects or 

doing a holistic needs assessment. 

Building local support networks 

At the present time, cancer-specific 

level four sexual rehabilitation (intensive 

PLISSIT Model of Addressing Sexual Functioning (Annon, 1974) 

Permission 

Limited information 

Specific 

suggestions 

Intensive 

therapy 

Giving patients permission to 

raise sexual issues 

Giving patients limited information 

about sexual side effects of treatments 

Making specific suggestions based on 

a full evaluation of presenting problems 

Referral to intensive therapy (includes 

psychological interventions, sex therapy 

and/or biomedical approaches) 

therapy) services aren’t available in the 

majority of locations. Where this is the 

case, it’s important to try to develop a 

local support structure. This may involve 

exploring existing cancer services 

to see who is interested in helping 

patients with sexual difficulties; what 

good work is already taking place; and 

how people could work more closely 

together across disciplines and cancer 

types. It’s also important to get to know 

the more generic services available 

to help people with sexual problems 

outside of cancer services, for example, 

local psychology, urology, gynaecology 

and sexual health departments. Most 

locations will also have a Relate centre 

within reasonable distance. A small 

number of local cancer services have 

an agreement with Relate to fund a 

specialist service for people with cancer. 

Otherwise patients will usually be able 

to contact Relate on a private basis 

where they may incur a reasonable fee. 

Due to the multi-faceted nature 

of sexuality and sexual problems, it’s 

important to try to get expertise from a 

range of specialisms when setting up or 

developing any professional network. 

You may also be interested in joining a 

relatively new online discussion forum 

for sexual rehabilitation after cancer at 

networks.nhs.uk 




Lisa Punt 

Macmillan Consultant 

Radiographer in 

Gynaecological Oncology 

Addenbrooke’s NHS Trust, 

Cambridge 

01223 256710 or 01223 

245151 bleep 152 446 

lisa.punt@addenbrookes.nhs.uk 

References 

1 

National Forum of 

gynaecological oncology 

nurses. Best practice 

guidelines on the use 

of vaginal dilators 

in women receiving 

pelvic radiotherapy. 

July 2005. Published by 

Owen Mumford, Oxon. 

2 

Miles T. and Johnson N. 

Vaginal dilator therapy for 

women receiving pelvic 

radiotherapy. Cochrane 

Database of Systematic 

Reviews 2010, Issue 9. 

Art. No.: CD007291. 

DOI: 10.1002/14651858. 

CD007291.pub2. 

Sexual changes 

Lisa Punt, Macmillan Consultant Radiographer in 

Gynaecological Oncology, writes about changes women may 

experience following pelvic radiotherapy and what can help 

There are many dimensions 

to cancer that can have 

an impact on a woman’s 

sexuality. Psychological, 

behavioural and physical 

changes are often difficult to 

separate and this can make 

addressing sexual effects a 

complex process. 

Effects of radiotherapy 

Pelvic radiotherapy is 

used either as a primary 

or adjuvant treatment for 

gynaecological or lower 

gastrointestinal cancer. 

Radiotherapy to the 

pelvis may result in 

short-term side effects 

such as fatigue, nausea, 

diarrhoea and perineal 

soreness, all of which can 

contribute to a loss of 

desire during a course of 

radiotherapy. Long-term 

effects may include direct 

damage to the vaginal 

mucosa resulting in the 

lining becoming thinner, 

and vaginal stenosis, which 

may lead to the formation 

of adhesions and fibrosis. 

These changes will lead to a 

shortening and narrowing of 

the vagina and, ultimately, 

pain and discomfort during 

sexual intercourse. 

Vaginal dilators 

These tampon-shaped 

plastic devices are used to 

reduce the risk of vaginal 

stenosis and formation 

of scar tissue. National 

recommendations were 

first published in 2005 

by the National Forum 

of Gynaecological 

Oncology Nurses. [1] The 

recommendations suggest 

using a vaginal dilator 

three times a week for 5–10 

minutes, for an indefinite 

time period. However, a 

recent review [2] of published 

research found that routine 

vaginal dilation during, 

or soon after cancer 

treatment, may be harmful 

in very rare cases if used 

during the inflammatory 

period or immediately after 

radiotherapy. Women are 

now advised to use the 

dilators four weeks after 

completing radiotherapy to 

minimise risk during the time 

when the vaginal lining is 

most likely to be damaged. 

While there is a lack 

of evidence to support the 

optimal use of vaginal 

dilators, it’s evident from 

clinical experience that the 

process of dilation improves 

vaginal capacity for some. 

Menopausal symptoms 

A woman who undergoes 

pelvic radiotherapy and 

hasn’t already entered 

menopause will enter 

a treatment-induced 

menopause. The effect of 

changing oestrogen and 

androgen levels on sexual 

desire is poorly understood, 

but these clearly have a role 

to play. It’s believed that 

oestrogens and androgens 

work together to promote 

libido. Circulating oestrogen 

within the blood also plays 

an important role in the 

maintenance of healthy 

vaginal mucosa. Declining 

levels of oestrogen will 

result in the shortening and 

narrowing of the vagina, 

reduced vaginal blood flow, 

loss of lubrication, increased 

pH and atrophy of the 

vaginal wall. 

The effects of reduced 

oestrogen on the vaginal 

mucosa may be improved 

with the use of oral 

hormone replacement 

therapy in women who 

have a oestrogen-receptor 

negative tumour. If vaginal 

atrophy continues or there is 

persistent vaginal irritation 

or infection, then it may be 

necessary to offer topical 

oestrogen cream. 

Just as normal sexual 

function relies on a complex 

interplay of physical and 

emotional well-being, 

addressing sexual difficulties 

requires a holistic approach. 

Difficult decisions 

Chris*, 57, talks about the impact of having a radical prostatectomy 

on his life, sexuality and relationship with his wife 

‘I was diagnosed with prostate cancer in 

October 2007. I’d suffered three urinary tract 

infections in five years so my doctor suggested 

doing some tests.’ 

‘I went to see a private specialist who did 

a urine flow rate check. This charts normal 

flow and mine wasn’t normal. They also felt 

the prostate and did a PSA test. My PSA test 

wasn’t bad; the normal is under four and 

mine was only six, so marginally over.’ 

‘However, all of these things added 

together and I was sent for a biopsy. 

Following the biopsy, I was sent for a CT 

scan that confirmed the cancer was confined 

to the prostate and hadn’t broken into the 

surrounding tissue.’ 

‘I went back to the consultant and was 

given 4–5 options and to be perfectly honest, 

you wouldn’t want to choose any. I had been 

given an information booklet back in October, 

so my wife and I had lots of time to think 

about the various options depending on the 

outcome of the tests. The option I went for was 

to have the entire prostate gland removed 

(known as a radical prostatectomy). My wife 

and I discussed the pros and cons and felt this 

was the best way to go.’ 

Making treatment decisions 

‘I chose this treatment option because it 

was my best chance of survival. The things 

that made the choice very difficult were the 

possibility of incontinence and impotence.’ 

‘The incontinence was my main worry but it 

only lasted 3–4 weeks after I left the hospital. I 

had to be careful for a while and concentrate, 

but it’s pretty much forgotten about. To me it 

was a really huge thing at the time.’ 

‘The surgery left me impotent, but there are 

a number of things I can do, such as using a 

vacuum to pump blood into the penis or using 

injections. The main inconvenience of using 

these methods is that it’s not spontaneous – 

you have to plan for it.’ 

‘No matter how “fruity” you feel, it just 

doesn’t work anymore. It’s really miserable 

knowing that you’re never going to get an 

erection again. The injections are good, but 

not as good as the real thing.’ 

Family relationships 

‘It’s been very difficult, but my wife and I 

manage to work through the issues ourselves. 

While we don’t visit a counsellor, we do talk 

openly about our situation with my consultant.’ 

‘It’s just been so easy with the consultant. 

I take my wife to the consultations and we 

chat about our sexual relationship. You have 

to take it in your stride. We’ve laughed about 

it. It’s not really funny, but you do.’ 

There have been times when I get down 

and get a bit short with my wife out of 

frustration, but she doesn’t do the same to 

me. My children suddenly realise their dad is 

mortal and are more tolerant of me than they 

were before because they know they may lose 

me sooner than they anticipated.’ 

Good advice 

‘It’s really important that patients understand 

the risks involved in any treatment. 

Professionals should make sure they convey 

the risks clearly and be fully satisfied that the 

patient understands the issues.’ 

‘I now volunteer at my local Macmillan 

information centre. Professionals should 

recommend their patients go down and look 

at what the centres have to offer and the wide 

variety of information to help them make 

decisions about their treatment.’ 


Macmillan has booklets about prostate 

cancer, and the PSA test. Visit be.macmillan. 

org.uk or call 0800 500 800. 

‘I chose this 

treatment option 

because it was 

my best chance 

of survival. The 

things that made 

the choice very 

difficult were 

the possibility of 

incontinence and 

impotence’ 

*Name has been changed. 




Sue Parkes 

Chief Executive, Relate GMS 

0161 872 1100 

sueparkes@relategms.co.uk 

76% 

of the 37 cases referred 

to Relate since April 

2010 said they were 

better able to cope with 

relationship difficulties 

Reference 

1 

Macmillan Cancer Support. 

Worried sick: the emotional 

impact of cancer. 

April 2006. Macmillan 

Cancer Support. 

Managing relationships after 

a cancer diagnosis 

Relate is providing specialist relationship counselling to people 

affected by cancer in Greater Manchester – Sue Parkes, Chief 

Executive at Relate GMS, says it is a much needed service 

‘I think that the person who has cancer gets 

information and support. But at no time 

did anyone speak to my husband. Maybe it 

would have helped and we may have even 

stayed together.’ 

This quote came from Macmillan’s 

report Worried sick, [1] which found that 

a cancer diagnosis can have a major 

impact on relationships. In the report, a 

third of people with cancer said that their 

relationships were put under ‘enormous’ 

strain, while a quarter experienced 

difficulties with their partner as a result of 

their cancer diagnosis. 

In response to these issues, Relate 

in Greater Manchester put a bid in to 

Macmillan to offer free counselling to 

people affected by cancer, and in January 

2010, a three-year partnership was formed. 

‘Relationships can buckle under 

something as serious as a cancer 

diagnosis,’ Sue says. ‘But counselling can 

really help adults, children, young people 

and families to talk about the tough stuff, 

on their own or together. This support is 

very individual and may be required at 

different times, for example at diagnosis, 

during treatment or after treatment.’ 

The service has now been running for 15 

months and aims to: 

• help couples, families and individuals 

make relationships work better 

• help people talk to each other 

• develop coping strategies 

• help with sexual problems. 

All the services are available to anyone 

who might benefit, including people in 

heterosexual or same sex relationships. 

Evaluation 

Relate has been working with their clinical 

team, trustees and Macmillan to develop 

measures to evaluate the service and to 

note the changes people experience as 

a result of counselling. This has included 

the collection of data from evaluation 

questionnaires. Both service users and 

professionals have been positive about the 

help provided by the counsellors. 

One service user said of the service, 

‘Excellent counsellor, knowledgeable, 

focussed, analytical and well-prepared.’ 

A referring health professional said, 

‘I have referred patients to the Relate service 

and the response from them has always 

been excellent – it really was no hassle and 

the patients were seen very quickly.’ 

From the 37 cases seen since April 

2010, 73% said it had a positive impact 

on their relationships and 76% said they 

were better able to cope with relationship 

difficulties. 

‘What’s really pleased us is that people 

are using the service and it’s making a 

difference,’ Sue says. 

Plans for the future 

The service aims to double its caseload and 

increase referrals to sex therapy by 2012. 

It has recently started a pilot ‘drop in’ 

service at the Macmillan Information Centre 

at University Hospital of South Manchester. 

Sue says this will give quick and easy access 

to counselling and hopefully raise the 

profile of the service. People will also 

be able to get support and information 

from the Macmillan information and 

support manager. 


Macmillan’s Worried sick report 

can be downloaded from 

macmillan.org.uk/worriedsick 

For more information about Relate, 

visit relate.org.uk 

Working with Relate in Wales 

Macmillan, in partnership 

with Relate Cymru, funds five 

Macmillan Relate counsellors 

to provide help and support to 

people in Wales. 

Macmillan Relate counsellors 

Claire Lewis, Dr Rachel Davies 

and Ray Jones will be offering 

specialised support to people 

affected by cancer in an area 

stretching from Carmarthenshire 

to Bridgend. 

Claire will be supporting 

families in the Carmarthenshire 

area. She says cancer has a 

huge impact on families. 

‘As well as the physical 

effects, people respond to the 

news in different ways and 

this can put new strains on a 

relationship. For some people it 

will bring them together, but for 

others it will create issues. We 

can help people work through a 

very difficult time in their lives.’ 

Ray Jones has been a family 

counsellor for 12 years and 

works with families, young 

people and couples. He said, ‘I 

have lost three members of my 

From left: Claire Lewis, Dr Rachel Davies and Ray Jones 

family to cancer in the past year 

and I have noticed that people 

are still afraid to mention it and 

will avoid the issue. Cancer 

throws everything up in the air 

and we want people to come 

through it with their family and 

relationships intact.’ 

Cath Lindley, General 

Manager for Macmillan in Wales 

says, ‘Cancer can leave a lasting 

impact on a person long after 

treatment ends. People usually 

think of the hair loss and other 

side effects of cancer, but often 

it is how it affects a person’s 

feelings about themselves that 

can be most distressing. This 

has an impact on the people 

around them.’ 

People can be referred to 

the Macmillan Relate Cymru 

counselling service through 

social workers, Macmillan 

professionals and nurses, 

their GP, or they can refer 

themselves by calling 01792 

454412 for south Wales 

and 01492 535140 for 

north Wales. 



Resources 

Psychosexual therapy 

Sue Lennon, Macmillan Nurse Specialist and Psychosexual 

Therapist, has developed a sexual support service for 

people affected by cancer 


Sue Lennon 

Macmillan Nurse Specialist 

and Psychosexual Therapist 

with Relate, Harrogate 

District Hospital 

sue.lennon@hdft.nhs.uk 

01423 553318 

Reference 

1 

Annon. J. The PLISSIT 

model: A proposed 

conceptual scheme 

for the behavioural 

treatment of sexual 

problems. Journal 

of Sexual Education 

Therapy.1976. 2:1–15. 

2 

Department of Health. 

Cancer Reform Strategy. 

2008. Department of 

Health. UK. 

3 

Kotranoulas. G. 

Papadopoulou. C. 

Patiraki. E. Nurses’ 

knowledge, attitudes 

and practices regarding 

provision of sexual 

health care in patients 

with cancer: a critical 

review of the evidence. 

Support Cancer Care. 

2009. 17. 479–501. 

Cancer and its treatment can interrupt 

life on many levels and the impact on 

relationships and sexuality is being 

increasingly recognised. 

I trained as a psychosexual therapist with 

Relate and recently set up a psychosexual 

therapy (PST) service for people with cancer 

and their partners, with support from 

Macmillan. The service gives people who 

have suffered a sexual impact from their 

cancer or cancer treatment the opportunity 

to explore and understand this. We set 

mutually acceptable goals to recover 

intimacy, sexual confidence or activity (with 

their partner if there is one), and patients are 

guided by me to achieve those goals. 

Learning points 

The service has been in development for 

10 months and has offered a number of 

learning points: 

1. Having taken advice from other general 

PST services, there was concern that the 

service might be swamped by referrals, 

so tight referral criteria were put in place. 

However, this tidal wave of referrals didn’t 

materialise, possibly because there was 

a need for awareness and education to 

help staff to talk about sexuality with their 

patients. 

2. Although there was evidence of good 

practice already, I was concerned about 

alienating staff who were less confident. 

I’ve taken every available opportunity to 

raise awareness and challenge assumptions. 

I offer stock phrases to help staff start 

conversations and I’ve introduced the 

PLISSIT model (see page 21) to help 

manage the consequences of these. 

Evaluation suggests that many staff now feel 

empowered to approach the issue with more 

confidence. Those already doing so were 

able to share good practice. 

3. Patient information leaflets needed to 

be written. A number of examples were 

sought from general PST service providers, 

and the local patient information and 

communication group provided input. 

4. I liaised with the multidisciplinary teams to 

ensure that as many consultants as possible 

were aware of the service and to open up 

discussion about whose job it was to do this 

work. The hospital newsletter also featured 

an article about the service. 

5. While staff needed help to ask the 

questions, patients needed help to talk about 

their concerns. Leaflets about the service 

were placed in all new patient information 

packs and information was posted in the 

chemotherapy unit. 

6. I have presented at numerous support 

groups and survivorship events. These 

presentations have received positive 

feedback and resulted in some patients 

sharing their stories. 

7. Given the extremely sensitive nature of 

discussions in the therapy room, I arranged 

for notes to be stored separately with 

medical records (as often happens within 

psychology services). 

Going forward 

The service has 13 patients and referrals are 

increasing as staff confidence grows. 

Macmillan Cancer Support improves 

the lives of people affected by cancer. 

We provide practical, medical, 

emotional and financial support 

and push for better cancer care. 

One in three of us will get cancer. 

Two million of us are living with it. 

We are all affected by cancer. 

We can all help. We are Macmillan. 

General enquiries 020 7840 7840 

Questions about living with cancer 

Call free on 0808 808 00 00 

(Mon–Fri 9am–8pm) 

Alternatively, visit macmillan.org.uk 

Hard of hearing Use textphone 

0808 808 0121, or Text Relay. 

Non English speaker Interpreters available. 

© Macmi lan Cancer Support, 2009. 3 rd edition MAC11679 

Macmi lan Cancer Support, registered charity in England and 

Wales (261017), Scotland (SC039907) and the Isle of Man (604). 

This paper is recycled – please recycle 

Sex, relationships and cancer resources 

For the public 

Macmillan Cancer Support 

www.macmillan.org.uk 

Macmillan has resources to help 

people understand how cancer may 

affect their sexuality and relationships. 

Cancer, you and your partner is 

designed to help people understand 

how cancer and its treatment can 

affect emotions, sexuality and the 

ability to communicate with their 

partner, and suggested things that 

may help. Sexuality and cancer looks 

specifically at the effect cancer and 

its treatments has on people’s sex 

lives and fertility. Relationships, sex 

and fertility for young people affected 

by cancer explains how cancer 

treatments can affect your ability to 

have children, covering fertility testing, 

fertility treatment and pregnancy after 

cancer treatment. You can order these 

for free from be.macmillan.org.uk 

or call 0800 500 800. 

A practical guide to living 

with and after cancer 

RelationShips, 

and 

sex fertility 

for young 

people affected 

by cancer 

Macmi lan and Cancerbackup have merged. 

Together we provide free, high quality information for all. 

MAC11679_relationships_E3_cover_AME_16.03.10.indd 1-2 16/03/2010 11:25:19 

A practical guide to living 

with and after cancer 

CanCer, 

you and 

your 

partner 

MAC12157_CancerYouandYourPartner_E2_final_EBM_30.6.11.indd 1 30/06/2011 10:17:41 

The following two booklets are 

written for patients but also provide 

good introductory material for 

professionals to help with patient 

conversations. 

Intimacy and Sexuality for Cancer 

Patients and their Partners, a 

booklet of tips and advice for 

your journey of recovery, 2010 

Provided by the Sexual Advice 

Association 

By Dr Darja Brandenburg, Macmillan 

Clinical Psychologist and Sex 

Therapist (ed.), Lorraine Grover, 

Clinical Nurse Specialist and Sex 

Therapist, Barry Quinn, Senior 

Nurse for Oncology and Lead 

Chemotherapy. Available from 

sexualadviceassociation.co.uk 

or networks.nhs.uk 

Sexuality and Cancer, 

October 2010 

Cancer Council Victoria 

Download from cancervic.org.au/ 

about-cancer/living-with-cancer/ 

sexuality_and_cancer 

For professionals 

Macmillan’s sexual relationships 

toolkit 

This toolkit brings together information 

and video clips to help you talk to 

patients about the issues surrounding 

sexuality and cancer. It’s available at 

macmillan.org.uk/learnzone 

Breaking the Silence on Cancer 

and Sexuality. A Handbook for 

Healthcare 

Anne Katz, 2007 

This handbook examines how specific 

cancers impact sexuality and discusses 

how cancer affects the family and 

the individual. It demonstrates how 

certain treatment modalities affect 

sexual functioning and provides tools 

for healthcare providers. Issues and 

interventions are discussed in detail 

and are accompanied by case studies 

and resources. 

Cancer and Sexual Health 

John Mulhall et al, 2011 

This reference book is designed to give 

a comprehensive review of the sexual 

and reproductive consequences of 

cancer diagnosis and treatment. It’s 

aimed at cancer clinicians and sexual 

medicine clinicians who may not see a 

large number of people with cancer. 

26 Mac Voice Autumn 2011

Resources 

October is Breast Cancer Awareness Month and Macmillan 

has a wealth of useful resources for anyone affected by or 

concerned about the condition 

Our online program OPERA 

(macmillan.org.uk/opera) helps 

people assess their inherited breast 

and/or ovarian cancer risk. It asks 

questions about family history and 

uses these details to give tailored 

advice and support. 

There is also a breast cancer forum on 

macmillan.org.uk/community where 

visitors can share experiences, support 

one another and discuss their feelings. 

We have up-to-date, in-depth 

publications aimed at people who want 

to learn more. Are you worried about 

breast cancer is a short leaflet looking 

at how genetic factors can influence 

breast cancer risk. 


Our booklet Understanding breast 



cancer explains 

emotional 

everything 

and financial 

from 

support 


causes and symptoms; to staging and 


grading; to treatment and clinical trials. 




Other titles include Understanding 

breast cancer in men, Understanding 

ductal carcinoma General enquiries in situ, 020 7840 7840 Breast 


Call free on 0808 808 00 00 

radiotherapy –(Mon–Fri possible 9am–8pm) long-term 


side effects, Understanding Hard of hearing Use textphone breast 

0808 808 0121, or Text Relay. 


reconstruction, Understanding breast 

© Macmillan Cancer Support, 2011. 4 th edition MAC11674 

Macmillan Cancer Support, registered charity England Wales (261017), Scotland (SC039907) the Isle of Man (604). 

screening and Understanding This paper is recycled – please recycle risk 

Next planned review in 2013 

reducing breast surgery. 

To order free copies 

Visit be.macmillan.org.uk or 

call 0800 500 800 to order any of 

these resources for free. 

A practical guide to tests 

and treatments 




emotional and financial support 






General enquiries 020 7840 7840 


Call free on 0808 808 00 00 

(Mon–Fri 9am–8pm) 


Hard of hearing Use textphone 

0808 808 0121, or Text Relay. 


UndErstaNdIng 

BREasT 

sCrEeNIng 

A practical guide to 

understanding cancer 

Macmillan and Cancerbackup have merged. 


MAC11674_E4_Final covers_EW_28.1.11.indd 1-2 28/01/2011 09:51:14 

© Macmillan Cancer Support, 2010. 1 st edition MAC11915 

Macmillan Cancer Support, registered charity in England and 

Wales (261017), Scotland (SC039907) and the Isle of Man (604). 

This paper is recycled – please recycle 

Next planned review in 2011 

Understanding 

Breast 

CAncer men 

in 

Breast men_final cover_AME_17.03.10 Folder.indd 1-2 17/03/2010 14:38:39 

Macmillan and Cancerbackup have merged. 


Crossword 

1 2 3 4 5 

6 

7 

8 

9 10 11 

12 

13 14 

15 16 17 

18 

19 

20 

21 

Clues across 

3 Room under the roof 

of a house (5) 

6 Accomplished (7) 

7 Stringed instrument (6) 

8 Blunt-nosed small rodents (5) 

9 Continental (8) 

12 A wanderer or gypsy (5) 

14 An inanimate object (5) 

15 Jewish Sabbath (8) 

18 Deceive or defraud (5) 

19 Informal party or gathering (6) 

20 To double-cross (3-4) 

21 Frock (5) 

Clues down 

1 Ambassador (8) 

2 Shut (6) 

3 Printed display to promote 

goods (6) 

4 Body of soldiers (5) 

5 Cups and saucers (5) 

6 Money kept for future use (7) 

10 A plague like the Black Death (8) 

11 Sleeping garment (7) 

13 Mature people (6) 

14 Business magnate (3) 

16 Keep out of the way of (5) 

17 Join into one (5) 


Answers across: 3 Attic 6 Skilled 7 Violin 8 Voles 9 European 12 Nomad 14 Thing 15 Saturday 18 Cheat 19 Social 20 Two-time 21 Dress 

Answers down: 1 Diplomat 2 Closed 3 Advert 4 Troop 5 China 6 Savings 10 Epidemic 11 Nightie 13 Adults 14 Tycoon 16 Avoid 17 Unite

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