Resources

Benefits made clear toolwww.macmillan.org.uk/ benefitsmadeclearAn interactive online benefits guide designed to help people affected by cancer find the financial support they may be entitled to. The tool educates people about the benefits system to help prepare them before they speak to a benefits adviser.

Macmillan’s Online Community www.macmillan.org.uk/ communityWith 54,000 members and counting, the Online Community offers a safe online environment for adults to share their cancer experiences with others.

Campaignswww.macmillan.org.uk/getinvolvedFind out about Macmillan’s campaigns to achieve better deals for people affected by cancer. The volunteering section explains opportunities available with Macmillan, including how to become a Cancer Voice.

Fundraising and ways to donatewww.macmillan.org.uk/fundraisingGet detailed information about fundraising events and search for your local fundraising office. The ‘Donate’ area has details about leaving gifts in wills, and other ways to donate.

Why Bother? www.whybother.org.ukSimilar to Click4Tic, Why Bother? is written for children, but for those younger than teenagers.

How we can helpwww.macmillan.org.uk/howwecanhelpHere you can search for local support groups, use the benefits adviser search tool, and find your nearest local support centre. You’ll also find the ‘Useful organisations’ database (macmillan.org.uk/organisationsearch), where you can search through a wide selection of cancer-related organisations and suppliers.

Click4Tic websitewww.click4tic.org.ukClick4Tic provides honest cancer information for people between 12 and 25 years. It also has a presence on social networking sites.

Cancertalkwww.cancertalk.org.ukNot to be confused with Cancertalk Week, this website provides information for teachers and other education professionals.

OPERAwww.macmillan.org.uk/opera An online program for people to check their risk of inheriting breast or ovarian cancer.

Macmillan has a wealth of information for people affected by cancer on its websites. Here’s a sample of what’s on offer.

Diet and cancer

Sharing good practice Demonstrating the value of Macmillan

clinical nurse specialists

talks about specialist palliative care

RushbyJames

In focus

For Macmillan professionalsIssue 56 Spring 2011

Crossword

Clues across 1 Spring or summer (6)7 Precise and accurate (5)8 Police guard dog (8)9 Name of a book (5)10 A particular variety (4)12 Fling up like the caber (4)13 Speck of grime (4)14 Stone or tree (4)15 Make beer (4)17 Spiders’ snares (4)19 Pit worker (5)20 End of play speech (8)21 Sister’s daughter (5)22 Elastic stocking band (6)

Clues down

1 Quick light mini-meal (5)2 Forgetful (6-6)3 Sounds of any kind (6)4 Next after ninth (5)5 Class of boxer (12)6 Road lined with buildings (4)11 Female deer (3)13 Work with needle

and thread (3)14 Citrus fruits (6)15 Fist fighting (6)16 Language of Greece (5)18 To clip or fleece (5)

Answers across 1 Season 7 Exact 8 Alsation 9 Title 10 Kind 12 Toss 13 Smut 14 Lime 15 Brew 17 Webs 19 Miner 20 Epilogue 21 Niece 22 GarterAnswers down 1 Snack 2 Absentminded 3 Noises 4 Tenth 5 Bantamweight 6 Street 11 Doe 13 Sew 14 Lemons 15 Boxing 16 Greek 18 Shear

2 | Mac Voice | Spring 2011 Mac Voice | Spring 2011 | 3

Contents Editorial

2 | Mac Voice | Spring 2011

New year,new look

We’ve increased the length so we can include more content and pictures. We’ve also changed the size so it feels more like a magazine and less like a document. And we encourage you to pull out Sharing good practice and file it away for future reference.

In this issue we focus on diet and cancer. Macmillan dietitians share some of the creative initiatives they’ve been involved in – all of which have helped people manage the effects

Further informationRosie CotterManaging Editor rcotter@macmillan.org.uk 020 7091 2219

More eye-catching. Easier to navigate. Enjoyable to read. These are some of the things we hope you’re thinking when you flick through this new look edition of Mac Voice.

We welcome feedbackYou can let us know your views about Mac Voice. Simply email macvoice@macmillan.org.uk or call 020 7091 2219.

Writers wantedMac 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

ContributorsGeorge Anastopoulos Hazel Brodie · Marie Browne Lynne Cairns · Jo Clarke Blanca Fernandez · Lisa Henry Helen Stradling · Roisin Mackle Sonia Mangan · Paul Maskell John McGuiness · Rhian Price James Rushby · Edward Wallace

Editorial boardCharlotte Argyle, Carers Support Manager · Kathy Blythe, Macmillan Development Manager · Colin Cosgrove, Information Development Manager 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 Eileen Mullen, User representative Esther Murray, Macmillan Consultant in Psychosocial Oncology · Heather Nicklin, Macmillan Specialist Palliative Care Social Worker · Terry Priestman, Consultant Clinical Oncologist Debbie Provan, Macmillan Project Lead Dietitian · Chris Sansom, Macmillan Development Manager Louise Wem, Macmillan Specialist Radiographer · Tracy Williams, Senior Information Development Nurse

Editorial teamRosie Cotter · Sajjad ShahGenevieve Osei-Kuffuor

of cancer and its treatment on diet. Have a look at pages 21–27 to find out more.

And remember, Mac Voice is for you. If you want to get involved, please email or call anytime. We’d also love to hear what you think about the new design – love it, hate it – let us know by emailing rcotter@macmillan.org.uk

Best wishes Rosie Cotter, Managing Editor

Encourage people living with cancer to use your service You can order branded promotional materials for free at be.macmillan.org.uk/signage

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

©Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). MAC5772_04_11

Printed on recycled paper – please recycle

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.

News 04–11 The latest from Macmillan, including results from the professionals’ research and award-winning cancer care teams

Q&A 12–13 We talk to James Rushby, Macmillan

Palliative Care Clinical Nurse Specialist and star of Supernurses, about specialist palliative care

Features 14 Continuity of care: specialist nursing

support for people with sarcoma

15 Psychological self-help for carers

16 Community solutions for older people

17 Older people’s pilot: exploring new approaches to cancer treatment assessment and support

18–19 Interpreting services

20 Skin cancer education and prevention

Sharing good Demonstrating the value of practice pull-out Macmillan clinical nurse specialists

In focus: 21–27 Helping people with cancer Diet and manage dietary changes:cancer Macmillan dietitians share their expertise and innovative ideas

Resources 28 Macmillan’s websites – how they can help you and the people you care for

4 | Mac Voice | Spring 2011

News

Mac Voice | Spring 2011 | 5

News

Why are people with rarer cancers losing out? The National Institute of Clinical Excellence (NICE) has to approve drugs before they become available through the NHS in England and Wales. Often NICE can’t approve drugs for rarer cancers because: • a small number of people

need them, which makes them more expensive

• there aren’t always enough people to take part in trials to get them approved

• they have to make sure NHS money is spent effectively, balancing the benefits of a drug against cost.

Macmillan believes everyone should get the drugs they need, regardless of what type of cancer they have

or where they live. And it’s not just us who think this – a survey conducted by Macmillan found that 90% of the public support people with rarer cancers having the same access to cancer drugs as people with common cancers, even if they’re more expensive.

Tell us your storiesSince the announcement,

Macmillan has been working hard to ensure that this fund works for people with a rarer cancer.

This month the fund comes into effect and we want to know how it’s working for people. Please email us at campaigns@macmillan.org.uk with any stories. For more information about Macmillan’s campaigns, visit macmillan.org.uk/getinvolved

Drugs for rarer cancers

people with cancer in England shared their views in The National Cancer Patient Survey, the first of its kind since 2004. To read the full report, visit dh.gov.uk

CancertalkWeek 2011

During 2010, Macmillan campaigned for people with rarer cancers to get access to the drugs they so vitally need. With thanks to our campaigners, the government announced a £200 million drug fund to help improve access to cancer drugs in England.

Boots UK helped Macmillan raise awareness during this year’s Cancertalk Week.

The week, held in February, is Macmillan’s annual media drive to get people to talk about cancer, to ask questions and share their concerns. Boots UK stores across the country promoted our services and over

100 stores hosted Macmillan information specialists. Thanks to everyone who got involved.

Further informationVisit macmillan.org.uk/

cancertalkweek for videos of people sharing their stories. For more about Macmillan’s partnership with Boots UK, visit macmillan.org.uk/boots

TransformingservicesMacmillan professionals eventThe fifth UK-wide Macmillan professionals’ event took place in early November 2010 and was the biggest and most successful one yet.

Further informationPresentations from the event

are available on Learn Zone – macmillan.org.uk/learnzone

In May, people in Scotland, Wales and Northern Ireland will vote in their national elections. Macmillan is campaigning to make sure politicians know why and how they can improve cancer care for people living with and beyond cancer in the three nations.

In Scotland, Macmillan is pushing for high-quality coordinated cancer care that is efficient, cost-effective and people-centred, with a focus on care and support both during and beyond treatment.

In Wales, Macmillan is calling for a national cancer strategy that gets to grips with the changing nature of cancer and puts people at its heart.

In Northern Ireland, Macmillan wants everyone living with cancer to have the best clinical, emotional, financial and practical help they need.

Pledge your support You can help Macmillan’s election campaigns by becoming an e-campaigner. If you don’t live in the three nations but have friends or family who do, please ask them to sign up today at macmillan.org.uk/changecancercare

In Scotland, Macmillan is calling for:• information, support and

benefits advice as a routine part of the cancer journey

• access to a cancer clinical nurse specialist for everyone diagnosed with cancer

• improved post-treatment care to meet the needs of people living with cancer.

In Wales, Macmillan is calling for a national cancer strategy that puts people at its heart.This will ensure that everyone diagnosed with cancer has: • their own care plan and

regular assessments• information and support on,

for example, financial advice and emotional well-being

• support from a key worker who understands their needs.

In Northern Ireland, Macmillan is calling for:• access to a clinical nurse

specialist for everyone diagnosed with cancer

• access to benefits and financial advice, and information and support for everyone diagnosed with cancer

• better post-treatment care for people living with cancer.

To help celebrate Macmillan’s centenary, we invite you to take part in the Biggest Thank You at biggestthankyou.org.uk The website is a fantastic way to tell a friend, loved one or colleague how much they matter.

RAGEThe final RAGE (Radiotherapy Action Group Exposure) report, Getting it right, is available from ncsi.org.uk/consequences-of-cancer-treatment

13–19

67,000

Jun

e

Carers Week 2011 This year’s theme is ‘the true face of carers’. For information and support, contact Charlotte Argyle, Carers Support Manager, on 020 7091 2041 or at cargyle@macmillan.org.uk

of the public support people with rarer cancers

90%

6 | Mac Voice | Spring 2011 Mac Voice | Spring 2011 | 7

News News

People with cancer can spend a lot of time in treatment and support facilities. You can show that your service and facility is at the leading edge of cancer care environments by applying for the Macmillan Quality Environment Mark (MQEM).

Cathy Hutchison is a Cancer Consultant Nurse at the Haematology and Oncology Day Unit at the Beatson Centre in Glasgow. She was thrilled her facility was one of the first to be awarded the MQEM. And the benefits have been felt far and wide.

Cathy says the main advantage was that it encouraged everyone at the unit to spend time reflecting on the service they were giving. ‘It got us thinking about the things we may not routinely consider. And it’s meant that we

were able to push on with the issues that were frustrating us,’ she says.

‘Being bench marked against other units is encouraging. We knew the standards were high. It’s given our staff a sense of ownership and pride in what they’re doing.’

What really resonated with Cathy was that a person with cancer was involved in the process, forming part of the assessment panel.

What next?To apply or to find out

how Macmillan can support your application, email mqem@macmillan.org.uk or call 020 7840 4760. Application fees are waived for all public, non-profit cancer care environments.

Award-winning cancer environments

Improving care after treatmentThe National Cancer Survivorship Initiative (NCSI) aims to improve the ongoing services and support that people living with and beyond cancer receive.

AprilBowel Cancer Awareness Monthwww.bowelcancer uk.org.uk

11–17 April Orchid Male Cancer Awareness Weekwww.orchid- cancer.org.uk

9–15 May Cancer Prevention Weekwww.wcrf-uk.org

1–7 June Volunteers Weekwww.macmillan.org.uk or email volunteering@macmillan.org.uk

6–12 June Cervical Cancer Screening Weekwww.jotrust.org.uk

Going above and beyondHelen Stradling, Macmillan Specialist Nurse, won the 2010 Cancer Nurse Leader Award. Yvonne McKenna, Macmillan Lead Cancer Nurse, was also a finalist in this category.

The award, presented at the Nursing Times Awards in November last year, recognises and rewards high-quality nursing leadership in cancer care.

‘I just do my job and so for others to acknowledge that it is being done well is a great feeling,’ says Helen.

Helen is based at the Nuffield Orthopaedic Centre and Oxford Cancer Centre. It’s 1 of 5 centres specialising in bone and soft tissue sarcomas.

Since being in post, Helen has established nurse-led pre-assessment

Celebrating excellence in cancer care

and follow-up clinics, and undertakes annual patient satisfaction surveys.

Jo, the daughter of one of Helen’s patients says: ‘Helen has willingly gone the extra mile for my family, is fully committed, and cares passionately about her patients.’

You can read more about Helen’s service on page 14.

Macmillan professionals top oncology awardsMacmillan professionals scooped an impressive seven awards at the Excellence in oncology awards, held in October last year.

Dr Tessa Leverton, colleague Dr Rob Glynne-Jones and the team, won the ‘best professional education initiative’ category for their DVD-based training programme called The Clinic.

Aimed at clerical and support staff, the DVD aims to ensure all patients are treated with dignity and respect. You can watch the training videos at macmillan.org.uk/learnzone

Macmillan winners Clare Dikken, Macmillan Cancer Nurse Specialist; Dr Darja Brandenburg, Macmillan Clinical Psychologist; Rachel Sharkey, Macmillan Clinical Nurse Specialist in Urology Cancers; Elizabeth Potter, former Macmillan Cancer Nurse Specialist; the Bournemouth Active Cancer survivorship project; and the Leicester Thoracic Oncology Unit Team at University Hospitals of Leicester NHS Trust.

Congratulations to all the winners.

Macmillan launched the partnership with the Department of Health in England in 2008 with the aim that everyone with cancer should have:

• the option of receiving a personalised assessment and care plan

• support to self-manage their condition

• information about the long-term effects of living with and beyond cancer

It has now started to prototype sites and testing is underway.

You may have seen the NCSI mentioned in Mac Voice before. We’ll continue to keep you updated about the exciting work of this initiative.

Want to know more? Visit the website at

ncsi.org.uk or contact Sonia Peart, Survivorship Implementation Manager, at sopeart@macmillan.org.uk

• access to specialist medical care for complications that occur after cancer.

Since its launch, the NCSI has introduced new models of aftercare based on the type of cancer people have, the treatment they’ve received and how much support the person is likely to need.

NHS Improvement is supporting its delivery and has been piloting models of improved care and support in England and Wales.

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Helen Stradling: cancer nurse leader

8 | Mac Voice | Spring 2011 Mac Voice | Spring 2011 | 9

NewsNews

The Arden Cancer Network’s Young People’s Group, a support group for 16–25 year olds affected by cancer, found there wasn’t enough information for young people caring for someone with cancer.

‘Our first thoughts on beginning to open up to each other was a sense that most of us had felt alone at some point in the cancer journey,’ Aphra Tulip, Group Founder, said.

The group wrote a draft booklet for young carers and got in touch with Macmillan to help expand it.

‘Once we decided we wanted to write a young carers guide, we approached Macmillan at a one-day conference. We started by chatting to the CEO, because why start at the bottom when you can start at the top? We then got introduced to the right people who took us seriously. That gave the group a lot of confidence. We already had a draft to send in which was our starting point. We then met with Macmillan staff and a writer, and the guide was produced. It has been a pretty exciting time.’

Young carers share their experiences

New diet and cancer resourceA new e-learning package aims to help cancer care professionals improve their nutritional knowledge.

Many professionals say they lack confidence when discussing some of the nutritional issues that arise during cancer treatments,

and up to 60% of those surveyed said they needed more training.

NHS Ayrshire and Arran developed Nutritional Care of People Affected by Cancer after consultation with people affected by cancer, carers, and staff within the voluntary sector and healthcare settings. Macmillan provided funding for the project.

The package is made up of five modules: weight; therapeutic, complementary and alternative diets; medications and treatments;

One of Macmillan’s latest resources, Let’s talk about you, all started with a motivated group of young people.

The guide is based on the experiences of the group and other young people who’ve cared for someone with an illness. It covers some of the practical issues faced by carers aged 12–18, and gives information and advice on coping with feelings, looking after yourself, and where to turn to for support.

Want a copy of Let’s talk about you?It’s available to order from be.macmillan.org.uk

or by calling 0800 500 800. You can also download it at macmillan.org.uk/youngcarers

Factfile 2011We’d like your feedback on the latest edition of the factfile. Please email factfile@macmillan.org.uk Haven’t recieved a copy? Call 0800 500 800 or visit be.macmillan.org.uk

provision of information; and body image. It encompasses both primary and secondary prevention messages, and gives advice about nutritional care during active treatment and palliative care.

You can access the package at macmillan.org.uk/learnzone

Want to know more? Please contact Sharon

Little, Macmillan Dietitian, on 01563 546953 or sharon.little@aapct.scot.nhs.uk or Debbie Provan, Macmillan Project Lead

Dietitian, on 01563 538627 or debbie.provan@aapct.scot.nhs.uk

Macmillan nurses treated to relaxing spa day

Reading up on weight loss

The singer asked that £1000 of spa vouchers should be given to Macmillan nurses in the Macmillan Celebrity Stocking Auction.

‘Macmillan Cancer Support does such an amazing job providing all kinds of vital support for people affected by cancer. I thought it would nice to give a few Macmillan nurses a lovely treat! I hope they have a well-deserved and relaxing time at the spa. This is just a little thank you from me,’ Nicola Roberts said.

Every year Macmillan asks 12 celebrities to name the items they wish to have in their dream stocking. It can be anything from five-star luxury holidays to their favourite beauty products and fashion brands.

Macmillan contacts the brands the celebrities have listed and asks them to donate the item. The charity auctions off the celebrities lists and they are bought for around £10k–£15k each. The 2010 auction raised £173,125.

Sharon Richey, the Managing Director of BEcause Experiential Marketing, won the bid for Nicola Roberts’ stocking. She allocated the spa vouchers to Macmillan breast cancer nurses in the area of London where her friend is currently receiving treatment for breast cancer.

Terry Anne Leeson, a Macmillan nurse at Hillingdon Hospital, said: ‘I was absolutely speechless when I heard. It is such a thoughtful gesture and I was really thrilled.’

The end of treatment has been identified as a time when people with cancer take the opportunity to think about their lifestyle and how they can make positive changes.

A new publication from Macmillan aims to help by providing information for people who have gained weight during or after cancer treatment.

Managing your weight after cancer treatment contains self-management strategies for losing weight along with information on where to get expert advice and support.

Although many people expect to lose weight during cancer treatment, certain chemotherapy drugs, steroids and hormonal therapies can cause weight gain. Up to 75% of women undergoing chemotherapy for breast cancer gain weight.

The booklet discusses what a healthy weight is and how to measure it and the information focuses on maintaining the correct energy balance to achieve weight loss.

There is advice on how to set an achievable target for weight loss over a realistic time period. A food and activity planner is included as research into weight loss programmes has demonstrated the benefits of keeping a food diary.

With increasing evidence linking obesity with poorer outcomes in certain cancers, we want to provide people with information that encourages active participation in their rehabilitation and promotes good health and well-being. The booklet will be available free from be.macmillan.org.uk or by phoning 0800 500 800.

Five Macmillan nurses were pampered with a spa day thanks to Nicola Roberts of Girls Aloud.

(Left to right standing) Vanessa Cross Imperial Charing Cross, Terry Anne Leeson Hillingdon Hospital, Nadine Teuton Hillingdon Hospital. (Left to right sitting) Christina Papadopoulou Ealing Hospital and Elizabeth Patterson Hillingdon Hospital.

10 | Mac Voice | Spring 2011 Mac Voice | Spring 2011 | 11

Research NewsNews Policy

Professionals’ research: next steps

Your contribution was critical to the success of the research, allowing us to gain insight into some of the key issues you face, and how you perceive many aspects of your relationship with Macmillan. With 1,275 responses (31%), and good representation across all roles, regions and nations, we feel that we now have a much better understanding of how we can best support you.

Key resultsSome of the most encouraging results (see opposite) for Macmillan were those relating to your engagement with us as a whole.

This is very positive; but the research also revealed there are areas Macmillan can improve on, which will enable you to work even more effectively and feel better supported and valued. We are concerned that, for example, only 56% said you feel valued by us and only 58% of you are satisfied with Macmillan’s support. Professionals working in palliative care and those in post for many years are particularly dissatisfied. More specifically, you told us that we need to do more to help you develop and sustain your role and service; provide you with ongoing support through more face-to-face contact; and communicate Macmillan’s strategy and the critical contribution professionals make.

We are determined to respond to this helpful feedback as well as offering you opportunities to do more of what you said you are most interested in: contributing to best

practice development, promoting Macmillan through your work, and influencing service and policy developments.

Going forwardIn response to the wealth of findings, we’ve developed a detailed three-year plan to create a more effective relationship with Macmillan professionals. Over the next few years we will work to:• help you improve your service,

develop your role and manage your work challenges in the context of changing environments and cancer care

• provide you with more opportunities for personalised contact with Macmillan

• clearly communicate Macmillan’s strategy and the expectations we should have of each other

• improve access to learning and development resources and provide specific support to meet the needs of particular groups.

Our new professional engagement plan is something we’re very passionate about and committed to. We believe that by delivering gradual improvements to your experience of being a Macmillan professional over the next few years, we’ll be able to provide better support and outcomes for people affected by cancer.

Want the full report?Contact Sue Hills,

Professionals Engagement Manager, at shills@macmillan.org.uk

Within weeks of coming to power in May last year, Health Secretary Andrew Lansley had published his plan to ‘liberate the NHS’ from ‘excessive bureaucracy and top-down control’, and put power in the hands of patients and front-line staff. His white paper, Equity and excellence: Liberating the NHS, is underpinned by three principles: to put patients at the heart of the NHS; to focus on outcomes, not process targets; and to empower clinicians.

GP commissioningA key feature of the reforms, and perhaps the most controversial to date, is the plan to scrap strategic health authorities (SHAs) and primary care trusts (PCTs) and hand responsibility for NHS budgets and commissioning to GPs in 2013. Moving the responsibility to GPs, the government says, will bring decision-making and control of resources closer to patients, ensuring that commissioning decisions are underpinned by clinical insight and knowledge of local healthcare needs.

The planThe idea is that GP practices will come together in ‘consortia’ to commission

All changeJo Clarke from Macmillan’s policy team discusses proposed changes to the NHS and what impact these may have on cancer care

Following the in-depth research Macmillan conducted with its professionals last year, we are now pleased to share the key findings with you and our plans for the future

98%

98%

Feel confident about referring patients to Macmillan’s services

highly value Macmillan’s resources

want to work to improve cancer services

90%

of you are proud to be part of Macmillan

90%services for their local population. How many GP practices will be in each consortium has not yet been decided, and the government has said that those decisions should be taken locally. In the pilots, one consortium has only three practices in it, while another has 105.

The Government doesn’t think that GPs will be actively involved in every aspect of commissioning. GPs will lead the clinical design of local services, and buy in support for managerial tasks, like dealing with provider contracts. However, some are concerned that budgets for this support are being slashed, with GPs only getting half of

what PCTs currently do for management.

Commissioning for cancer is complexThere are many different types of cancer requiring many different types of treatment and care. Cancer also cuts across many different services, which need to be coordinated along the care pathway. Commissioning cancer pathways will therefore be a real challenge for the new GP commissioners. At the moment, PCTs get support for cancer commissioning from experts within cancer networks, however the government has said funding for networks will end in April 2012. Charities, including Macmillan, have been asking the government to consider the effect this will have on cancer commissioning, and asking for other commissioning support structures to be put in place to help GPs.

Outcomes, not targetsAnother big shift is the scrapping of ‘top-down targets’ in favour of measuring patient outcomes. Under the Labour government, the NHS was set a number of targets that it had to meet to show it was performing effectively. These included things like GPs having to see patients within 48 hours, and patients being treated within 18 weeks of GP referral. The new government says that these targets distorted behaviour and distracted attention from the ultimate goal of improving patient outcomes. They have instead produced an ‘Outcomes Framework’, which includes measures like ‘five-year cancer survival rates’. The government says clinicians should be trusted to make the right decisions for their patients on how improvement in these areas can be achieved.

Waiting time targets for cancer treatment are the exceptions to this rule, however. The government has recognised that these have helped to drive service improvement and have been beneficial for patients, and so these will remain.

What happens next?The government’s plans have to be discussed in parliament before they can become law. Despite the controversy and opposition from many within the health sector, it’s likely these major shifts will happen.

12| Mac Voice | Spring 2011 Mac Voice | Spring 2011 |13

What does your role involve?Specialist palliative care is about incorporating a holistic approach to care and recognising the complex, multiple effects that an illness has on the patient, families and their wider support network. I also offer bereavement support to carers and the wider family.

Although a palliative approach is appropriate at any time, most of the patients I see have a poor prognosis.

What are the biggest challenges?Arriving into a complex and fraught situation where patients and families are anxious and distressed can be exhausting. But being able to leave the patient and family feeling calmer, more reassured, and with a clear plan of care, is very rewarding.

What do you most enjoy about the role?Although it’s a bit of a palliative care cliché, I like making a difference to patients’ lives and helping them to achieve their wishes. This could be controlling their nausea during chemotherapy, or ensuring they die at home as they wanted.

It’s also professionally satisfying to be able to act as a resource to others, such as district nurses and GPs. The ‘thank yous’ go a long way to making me feel like I’ve made a difference.

What projects have you been involved with since being in post?I have supported the introduction of the Liverpool Care of the Dying Pathway, the Gold Standards Framework Programme and the Preferred Priorities for Care across both the hospital and community settings.

For the past three years we have held a successful cancer care conference, and I have been involved

in all aspects of its planning and delivery. I act as the team lead for the regional user survey. The results help us to provide a quality service to patients and carers.

Education is a key component of the role and I deliver training to health and social care professionals including Foundation Year 1 & 2 doctors and district nursing staff.

Recently I contributed to a review of the drug prescribing guidance for patients at the end of life in the area.

Appropriate and timely information is an important part of the patient journey and I have been involved the development of several patient and carer leaflets working closely with our Patient Information Reference Group.

How would you like specialist palliative care to develop?I would like to see an increase in non-medical prescribing within specialist palliative care and the introduction of clinical skills training to support prescribing. This would improve access to appropriate medication for patients and improve consistency.

I would also like to see the move to seven-day working in specialist palliative care. I think we have an important role to play in helping reduce hospital admissions at the end of life, and supporting the rapid discharge of patients with specialist palliative care needs.

What is the most unusual job that you’ve had?In many ways this post is perhaps the most unusual. It’s unpredictable and the variety certainly get the cogs turning in the morning. Outside of nursing, my most unusual job was probably working in the freezers in a supermarket – a job which nearly gave me frostbite every week!

NameJames Rushby, Macmillan Palliative Care Clinical Nurse Specialist LocationMacmillan and Specialist Palliative Care Team at NHS Heywood, Middleton and Rochdale

In postSince 2010 (previously in post as a Macmillan Associate Palliative Care CNS)

What was it like being involved in the documentary Super Nurses?Taking part was an honour because there are so many nurses out there doing great work. The filming schedule was sometimes challenging and time consuming. However, on reflection, it was a once in-a-life-time opportunity to showcase the work being undertaken with patients, and it was great fun working with the production company. I feel very proud and grateful to the patients and families who were brave enough to tell their very personal stories to the camera.

Order the latest edition from be.macmillan.org.uk or access it online at macmillan.org.uk/cancerpublications

A directory of information materials for people affected by cancer 2010/2011

Mac Voice | Spring 2011 | 15 14 | Mac Voice | Spring 2011

Carers FeatureFeature Sarcoma

arcoma is a rare form of cancer accounting for around 1% of

all new cancer diagnoses each year. It affects all age groups, and depending on the type of sarcoma, the treatment can include surgery, radiotherapy, chemotherapy or a combination of the three.

In 2005, the Nuffield Orthopaedic Centre in Oxford became 1 of 5 nationally commissioned centres for the care of people with sarcomas.

One of the measures for the sarcoma service included the need for a clinical nurse specialist and I came into post with experience of caring for people with sarcomas on the inpatient ward. Prior to my appointment, people treated in Oxford had no constant specialist nurse support and only had contact with professionals at outpatient appointments or when receiving treatment.

Improving servicesIt was difficult at the beginning to show how my post would benefit patients, their families and other colleagues. However, over the last five years I’ve been able to make changes to the service which benefit patients and ensure their cancer experience is as smooth as possible.

One of the major changes to the service was employing a Macmillan cancer support nurse. This was driven by the patients who said that they had nobody to contact when I was on leave or teaching. The support nurse, Pippa, has now been in post for 18 months and has really allowed the service to make significant changes.

Problem solvingWe were having a few problems getting the patients through a pre-operative assessment because the short time in which to treat them. I now undertake a nurse-led pre-operative assessment, which all patients scheduled for sarcoma surgery attend. I have also started a nurse-led follow-up clinic for people who are two years post-treatment. This clinic allows us to focus on more social aspects of care, such as giving advice about work, benefits, relationships and long-term effects. The patients also have their routine x-rays and scans undertaken as protocol, but it means their appointments aren’t rushed and they have

Helen Stradling talks about her award-winning support service for people with sarcoma

Continuity of care

time to discuss any issues. Patients have found the

clinic helpful, with one saying: ‘I was very pleased with the nurse-led follow-up clinic and consider it beneficial at this point.’

I found that the number of people who are seen in the sarcoma clinic who didn’t know they were being referred to a cancer clinic staggering. Even in the 2010 patient satisfaction survey, 50% said they hadn’t been told they were being referred to a cancer clinic. We now have a process where all patients being referred to the clinic are contacted by either myself or Pippa to ensure they have received their appointment letter; to explain to them why they have been referred to us; and what may happen during their appointment. We undertake patient satisfaction surveys annually and use the feedback to make improvements.

Related informationMacmillan has

booklets and fact sheets about different types of sarcoma. You can order these at be.macmillan.org.uk or by phoning 0800 500 800.

Further informationHelen Stradling Macmillan Musculoskeletal Cancer Nurse Specialist Nuffield Orthopaedic Centre, Oxford 01865 738282 helen.stradling@noc.nhs.uk

emand for psychological help for carers led to the

establishment of the Coping with Caring group over two years ago.

The group provides a forum for carers to support each other and gives them strategies to manage stress and to look after themselves.

The service is run by two facilitators – currently a family psychotherapist and a social worker – however other members of the cancer and palliative care team are encouraged to facilitate as well.

Group sessionsThe programme is delivered over a six-week period. Each week focuses on a different strategy and cognitive behavioural ideas are used: • Week 1 focuses on stress

and its effects.• Week 2 encourages

the use of relaxation techniques.

• Week 3 explores sleep issues and how they may be improved for carers.

• Weeks 4–6 focus on thoughts and how they can be managed to reduce stress.

Each participant records a diary of their activities, stress and mood levels.Ground rules are written by the group in the first week. These rules help create a safe environment to share difficult thoughts, emotions and experiences. This element of the group is always well-evaluated and is seen as a unique space in which carers can speak and listen with others who understand their situation.

Challenges and solutionsThe group has encountered some challenges over the

last two years. Maintaining facilitator input has been difficult at times due to numerous commitments; however, the appointment of a family psychotherapist to the cancer and palliative care team has helped. They have led and maintained a commitment to the group with the continued support of the other facilitators.

The greatest challenge recently has been a drop in the referral rates, which has been attributed to changes in the Macmillan nursing teams. The group can run effectively with 4–8 people, with 10 as a maximum.

Marketing of the course takes time and commitment. We are currently reviewing our leaflet in an attempt to encourage more participants. We’ve always been aware that the group name: ‘Coping with Caring – a support group for carers’, may not seem

applicable to many of those who would benefit from this group, primarily because they don’t identify themselves as carers.

A recurrent criticism of this group was that carers had no onward support after the programme ended. Fortunately this is no longer the case as our local hospice, Keech Hospice Care, has established a carer day and we are able to complement each others’ service. The service is also well-supported by Hospice at Home team, Macmillan, and the cancer and the palliative care psychology team ensure good communication to group members and professionals.

Related informationGood practice in

running your group and Promoting your service are available at macmillan.org.uk/learnzone

Setting up and running a support group for carers

Psychological self-help for carers Further information

Marie Browne Macmillan Specialist Psychotherapist for Luton and South Beds Cancer and Palliative Care Team 01582 709085 marie.browne@sept.nhs.uk

DS

Mac Voice | Spring 2011 | 1716 | Mac Voice | Spring 2011

Older people FeatureFeature Older people

Community solutions for older people

lder people affected by cancer in Cumbria can face a number of difficulties. Living in a rural setting

can be isolating and many travel long distances for treatment. Couple this with a higher than average older population, which is rising each year, and it’s clear that there are unique challenges for the county.

With this backdrop, the innovative Macmillan and Age Concern Community Support Project for older people affected by cancer is an important development.

The three-year project between Macmillan, four district-based Age Concern organisations in Cumbria, Cumbria County Council, and NHS Cumbria brings together community, voluntary and statutory organisations to meet the varying needs of patients, carers, relatives and friends.

Since January 2009, six project workers have been addressing the diverse needs of older people and have helped them to continue living independently.

As Macmillan Development Manager Stephen Williams noted at the outset, ‘There are plenty of excellent services and organisations out there, and we aim to link older people to them.’

Time is spent giving talks and attending events and community workers are working

to address gaps in local services. This could be by helping people set up a support group near to where they live, or working to secure funding for a drop-in centre, such as Stepping Stones in Barrow, a service for people coping with bereavement as a result of cancer. A walking group started in Longtown now has a waiting list to join. In cases where there isn’t a suitable service for an individual, workers will spend time meeting that person’s needs.

There are large differences between the districts. Contrast Eden, with its dry stone walls and rolling hills, with the dense housing and dockyards of Barrow. In Eden, a project worker is trying to resolve how best to meet the needs of older people in the travelling community. In Barrow, there is the problem of industrial asbestos-related diseases. Differences also emerge over time. Consider the impact of the devastating floods in autumn 2009, which inundated areas of Cockermouth and Workington. In these situations, the project workers are flexible, and support older people with whatever is needed.

Volunteers have been vital to the success of the project, many themselves affected by cancer. These individuals will be vital in securing the sustainability of new services.

Macmillan and Age Concern organisations are helping older people affected by cancer retain their independence

‘What else would we have been doing today? Sat at home worrying and being miserable’

n England, there are around 15,000 avoidable deaths[1]

from cancer each year in people over 75, and cancer mortality rates in this age group aren’t declining as rapidly as in the younger population. This can largely be attributed to late diagnosis and under-treatment.

Macmillan is working with the Department of Health and Age UK to address under-treatment of older people with cancer. In May, a number of pilot sites throughout England will begin to test new models of care for older people, including:

• testing new clinical assessment methods

• coordinating and delivering short-term practical support packages for those undergoing treatment

• promoting age equality to address discriminatory behaviour in cancer services.

Assessment methodsTwo older people with cancer may be the same chronological age but have different physiological ages. One older person interviewed for the recent

Macmillan Walking into the Unknown report said: ‘I asked my specialist nurse about the decision on my treatment to have the injections. She brought my file in and showed me a letter that had been signed by four consultants. It said that “due to the patient being 85 we recommend hormone treatment”.

‘I’m sure if I was 65 I’d be on a different treatment. I’ve always been really active; I’m not necessarily a typical 85-year-old.

‘It was like she was giving the game away, and it was at that point that I thought for the first time “this is palliative” not curative.’

Half of all cancers occur in people aged 70 or over. In the case of some older people with cancer, curative treatment won’t increase the quality or length of their life, and may be harmful. As such, older people commonly receive less aggressive therapies.

We hope that assessment methods routinely used in older people’s medicine will be adopted into cancer services. This may lead to identifying more older people for whom curative treatment would be appropriate, and reduce the

number of people denied treatment based on their chronological age.

Practical supportBy coordinating and delivering short-term practical support pilot sites, our aim is to reduce the number of older people who won’t accept cancer treatment because they don’t feel they’ll be able to maintain their independence and cope as a consequence. Practical support may include activities such as providing transport, housekeeping, shopping, and befriending.

Dr Winnie Kwan, a South London Macmillan GP involved in the pilot says: ‘Older people with cancer can be particularly vulnerable. It’s crucial that GPs have increased knowledge of each patient’s circumstances and work more closely with oncologists to deliver holistic assessment and coordinated care.’

The pilot will see greater collaboration between services and the voluntary sector to ensure that older people receive the support they need. Details of the pilot are available at macmillan.org.uk

Exploring new approaches to clinical assessment and support for older people with cancer

Older people’s pilot

Further information Sonia Mangan Director, Age UK South Lakeland 01539 728118 smangan@ageconcernsl.org.uk

Further information Hazel Brodie, Macmillan Older People’s Pilot Project Manager 020 7840 4668 hbrodie@macmillan.org.uk

References1 Report of the All Party

Parliamentary Group on Cancer’s Inquiry into Inequalities in Cancer (accessed at macmillan.org.uk/inequalitiesreport).

Our five pilot sites

Sussex Cancer Network

Thames Valley Cancer Network

Merseyside and Cheshire Network

North East London Cancer Network

South East London Cancer Network

O

I

18 | Mac Voice | Spring 2011 Mac Voice | Spring 2011 | 19

FeatureFeature

Breaking down barriers

Interpreting services

e’ve recognised for some time that language

is a significant barrier to Black and Minority Ethnic communities accessing cancer services. The relationship between the patient and the professional can come under strain when there is no common first language, and the many myths about cancer can lead to difficult and uncertain communication.

The obvious and most effective way to overcome these barriers is to use an interpreter, but this brings its own difficulties and requires a new skill set for both the professional and the

Further information Blanca Fernandez, Head of Macmillan Support Line 020 7091 2038 bfernandez@macmillan.org.uk

Further informationPaul Maskell Macmillan Senior Learning and Development Manager, EMNE 01904 756416 pmaskell@macmillan.org.uk

took a call from a Chinese lady today. She received a letter from her GP about cervical

screening but couldn’t understand what the words meant. I contacted an interpreter who was able to translate the words “cervical” and “smear” for her. It was wonderful to hear the penny drop on the other end of the phone as this lady finally understood why she had been invited to attend her GP’s surgery. She was so grateful,’ Macmillan Support Line staff member.

Staff on the Macmillan Support Line (0808 808 00 00, Mon–Fri, 9am–8pm) provide emotional and practical support, and clinical information and welfare rights advice to people affected by cancer, including people whose first language isn’t English.

We have a service which provides interpreters with at least two years relevant experience in over 300 languages. On 95% of occasions,

the service can connect us with an interpreter within three minutes. Interpreters support us in a range of situations, from simple to critical. Either way, the intervention of an interpreter can make a big difference as the testimonials from staff and callers show below.

One staff member says: ‘I received a call from an angry, volatile man who was threatening to commit suicide. During two long and difficult calls the interpreter remained calm and patient throughout. I was impressed by the ease with which she engaged him in conversation and the way she worked with me to defuse the situation.’

A caller reports: ‘I didn’t understand why my doctors were recommending my treatment and was going to refuse to have it as it sounded so frightening. But when you talked to me and took the time to explain so carefully, I was really reassured and understood why the treatment is so important.’

Blanca Fernandez, Head of Macmillan Support Line, explains how Macmillan uses interpreters

Kept in translationTo improve the effectiveness of this relationship, Nazir Makda, the Trust’s Equality and Diversity Manager, produced a policy outlining the management of interpreters with ALS. The Trust has allowed Macmillan to use this document and we will be producing a short toolkit which will be available at macmillan.org.uk/learnzone

It will cover all aspects of using interpreters. For example, it’s advisable not to use family members as interpreters in a clinical situation due to considerations of quality and patient confidentiality. Yet they may be appropriate in a general discussion about menu choices or a patient’s comfort. The document will also consider the role of volunteers, bilingual professionals and other people who may get involved.

interpreter. Not only must the professional know how to manage the relationship with the interpreter, but the interpreter must try to overcome their own cultural barriers regarding cancer, or the communication could be made worse.

DevelopmentsIn North West England, Macmillan is working with East Lancashire Hospitals NHS Trust and Applied Language Solutions (ALS) to try to provide solutions to these issues.

The Trust has a high south Asian population and the use of interpreters is well-established.

Some tips on using an interpreter:

• Allow time for introductions, sharing important information and completing paperwork. Check your interpreter understands any technical phrases you may need to use.

• The meeting must be conducted by the professional, not the interpreter.

• Talk to the patient and look at the patient, not the interpreter.

• Keep your language clear and simple, allowing as little room for ambiguity as possible.

The other side of this relationship is, of course, the interpreter. Macmillan has identified that however well-trained and prepared the professional is, if the interpreter is constrained by cultural taboos and inhibited by the language of cancer, then the

barriers to communication remain. They may even be compounded as the interpreter struggles to translate crucial information in a sensitive way such that vital meaning is lost.

We therefore approached ALS, the main provider of interpreting services to the NHS in the North West to help them develop better interpretation services for people affected by cancer. ALS recognised our concerns and is keen to use the online ‘Introduction to Cancer’ course to help their interpreters gain a wider understanding of cancer and the issues people face.

With Lesley McGuire’s assistance as Macmillan Learning Technology Manager, we have identified several ways that we can roll this out we look forward to extending the learning out to improve the access to care for people for whom language is a real barrier.

‘Developing interpreting services for people affected by cancer

WI

title News

Mac Voice | Spring 2011 | 21 20 | Mac Voice | Spring 2011

Feature Skin cancer

he number of people with skin cancer in Northern Ireland has trebled in the past decade.[1] This has led to the

need for more treatment and education, and has highlighted to the public the need to change their habits and behaviour.

I was appointed as a Macmillan early skin cancer clinical nurse specialist (CNS) in March 2009 to help the South Eastern Health and Social Care Trust meet the growing needs in this area of care.

It’s a unique role because I can assess, diagnose, treat and review people with early or pre-cancerous skin lesions and those of a non-melanoma skin cancerous type. It differs from the traditional skin cancer CNS role where patients have more complex skin cancers and require more counselling and support, which is provided by the complex skin cancer CNS in the Trust. People with early or pre-cancerous lesions usually have a good prognosis and are rarely affected with a poor outcome if treated early on. However, the CNS service is available to people with the initial diagnosis of melanoma or other skin cancer diagnosis for support and information.

An important element of the role is educating and giving advice to patients and relatives about diagnosis, treatment planning and preventative measures to avoid further episodes of skin cancer.

The first year in post involved a robust and extensive educational programme to ensure that theoretical knowledge and clinical skills were developed. This included a dermatology short course, a dermatology

surgical course for nurses, observation of a practical skills portfolio, clinical placements with similar specialist practitioners and study days on hand-held dermoscopy. This training programme has allowed me to holistically treat the patients attending the nurse-led clinics.

As part of the process of improving services for patients, I hope to provide a screening service using advanced digital dermoscopy. This would require further training to optimise the benefits of the service. At present I use a hand-held dermoscopy to magnify and illuminate the lesion being examined and depend on photographic images for monitoring purposes.

A digital dermoscopy would help to identify lesions which are less typical, or help make an earlier diagnosis of those with a potential to develop into a melanoma. The digital dermoscopy stores the information and allows for more precise monitoring of the lesion at subsequent appointments. However, due to financial constraints on the NHS at the current time, the cost for the equipment required for this service may be delayed.

It’s a very rewarding post as I get to accompany the patient through most of the care pathway. Patients have the option to see a doctor and there is usually a dermatologist clinic running alongside the nurse-led one for support and further discussion if required. It’s also great to see the effects of my practice and intervention.

Roisin Mackle’s specialist nursing post helps people with early or pre-cancerous skin lesions

Skin cancer education and prevention

Further informationRoisin Mackle Macmillan Early Skin Cancer CNS South Eastern Health & Social Care Trust roisin.mackle@setrust.hscni.net

References1 The Northern Ireland

Cancer Registry. (Accessed at qub.ac.uk/research-centres/nicr).

‘People with early or pre-cancerous lesions usually have a good prognosis’

T

In this section 22 Coping with

changes in diet John McGuiness

23 Co-morbidities and diet George Anastopoulos, Macmillan Oncology Dietitian

24 Promoting healthy eating Rhian Price, Macmillan Specialist Dietitian

25 Nourishing drinks Lynne Cairns, Macmillan Dietitian

26 Good nutrition for young people with cancer Lisa Henry, Macmillan Specialist Oncology Dietitian

27 Diet and cancer resources For the public and professionals

Mac Voice | Spring 2011 | 2322 | Mac Voice | Spring 2011

John McGuiness, who was diagnosed with mouth cancer two years ago, says having access to a dietitian was crucial to his recovery

Around Christmas 2008, John, who is now 58, discovered what he thought was a mouth ulcer on his tongue. A biopsy later revealed that the little ulcer was mouth cancer.

John had surgery to remove a piece of his tongue, some teeth and lymph nodes. This was followed by seven weeks of radiotherapy.

‘I had already lost weight before treatment, so my Macmillan head and neck clinical nurse specialist (CNS) referred me to a dietitian. I saw the dietitian before surgery because the cancer was very painful and I couldn’t eat terribly well. The dietitian recommended foods high in protein. She also suggested I try eating porridge. I had never had porridge before my diagnosis.’

John says the support from his CNS was crucial.

This wasn’t the first time John had been diagnosed with cancer either. In 1985, he was treated for early stage Hodgkin’s. He says there was nobody to help him manage his diet then. ‘The treatment I had was successful, but I lost about four stone.’

Treatment‘After surgery, I wasn’t able to do anything. I was fed via a drip while in hospital for 10 days. The dietitian was with me every day to make sure I was given enough supplements. They were always available to talk to my wife and family, and gave me the Macmillan recipe booklet and other publications.’

Two weeks after surgery, John began radiotherapy. He says dietary needs became really important at this stage. John describes his mouth as feeling ‘sunburnt’ following the radiotherapy.

AdaptingFor the next nine months the soft tissue in his mouth was very painful, but John got through it with support and help of his healthcare team.

‘Once I started to get stronger and could go out to restaurants, it was a difficult experience because of the things I couldn’t eat. It made me feel a bit depressed for a while when I was out with company. I felt a bit sorry for myself, but that soon passed. My main concern was getting better.’

‘It took me a while to adapt to my new regime,

but I manage my diet very well now. I can eat steak if I cut it up into small pieces and have it with gravy.’

‘I was always a big lover of sweet stuff like trifle, and I can eat that now. Radiotherapy plays havoc with your taste buds, but normal taste starts to recover after a year.’

I know I can always call my CNS or the dietitian – they are always at the end of the phone.

John says his symptoms will improve over time and he now has a regime to follow with the help of his wife.

‘I’m happy in terms of what I’m able to eat – I probably have a better diet now than I did when I was diagnosed. I’m not eating as much rubbish. I count myself very lucky.’

Related informationMacmillan has

a range of booklets about diet and cancer, including a recipe booklet. There is also a booklet about head and neck cancer.

You can order these for free at be.macmillan.org.uk or by phoning 0800 500 800.

Coping with changes in diet

‘I felt a bit sorry for myself, but that soon passed. My main concern was getting better’

John McGuiness

Co-morbidities and diet

People in palliative care with co-morbidities often receive differing nutritional advice from healthcare professionals. This can be a challenging situation to be in, as well as confusing or upsetting for the patients.

Diabetes One of the most common medical problems for people in palliative care is diabetes. In these situations, the goal shouldn’t be tight glycaemic control but symptom control instead. We don’t want to put further restrictions on an already undernourished person.

Advising on a low sugar diet for diabetes is a reasonable option when diabetes isn’t well-controlled, eg when the blood sugars are constantly in double figures despite oral hypoglycaemic agents and/or insulin treatment. Diabetes can have serious complications, so it’s important to liaise with the diabetes team to find out how far the disease has progressed. As a rule of thumb, 10g of carbohydrate raises blood glucose by 2–3mmol. Therefore for an undernourished patient with blood sugars of less than 10mmol, it’s probably okay to have ‘that trifle’. Remember, these patients are likely to manage small amounts anyway, so a small pot of a dessert containing 20g or even 30g of carbohydrate is fine.

If the blood sugars are consistently high, eg greater than 15mmol, then it may be wiser to suggest a low sugar alternative, with extra calories from fat and protein.

In cases where appetite is very poor and the patient only expresses a desire for sweet foods, then nourishment should become a priority and preferred food choices may be offered, irrespective of the sugar content.

Sometimes blood glucose rises due to other, non-dietary reasons. Blood glucose monitoring may be required and/or a review of the patient’s diabetes medication may be needed. If the patient is on a nutritional supplement, a fibre alternative may need to be considered.

Hyperlipidaemia and cardiovascular diseasePeople with a history of these illnesses may have been following a healthy eating regimen for years and it can be challenging to tell them that this may no longer be appropriate. Likewise, for people who follow a low-fat diet due to history of high blood lipids, it’s a good idea to check the result of their latest blood tests. If you’re unsure, liaise with their GP or the hospital doctor as appropriate. Quite often (especially when approaching the terminal phase) cholesterol lowering medication is withdrawn from patients’ prescriptions because the focus has shifted.

NeutropaeniaCheck if the patient is still immunosuppressed and/or having further chemotherapy. If they are, then a modified diet, which is low in bacterial/fungal counts, can reduce the risk of infections. Generally, the level of restriction recommended is dependent on the grade of neutropenia. If the patient is no longer immunosuppressed and/or having further chemotherapy, then all neutropenic diet restrictions can be lifted.

Related informationFor more on this topic, see the new

e-learning package mentioned on page 8.

Further Information George Anastopoulos, Macmillan Oncology Dietitian Queen Mary’s Hospital Sidcup 020 8308 3067 george.anastopoulos @nhs.net

Macmillan Dietitian George Anastopoulos discusses dietary options for people in palliative care with co-morbidities

Key points • Emphasis should

be on quality of life, so eating for pleasure can become the main priority.

• Patients get information from many sources.

• Check what the patient has been told before and reassure them that previous advice was correct at the time.

• Check with the patient’s GP or care team about the likely prognosis and act accordingly, taking into account the patient’s wishes.

• Nutritional support can change with disease progression.

Mac Voice | Spring 2011 | 25 24 | Mac Voice | Spring 2011

Promoting healthy eating

Velindre Cancer Centre in Cardiff covers the South East Wales oncology catchment area and sees over 2,000 inpatients each year. As a newly-funded Macmillan dietitian I was set the task of planning and delivering a nutrition awareness week within the centre. It was felt that the profile of the department and the importance of nutrition in cancer needed to be raised on the wards. I was supported by the band 4 dietetic assistant Hannah Edwards-Jones.

Raising awarenessThe aims of the week, held just before Christmas, were to increase peoples’ knowledge of nutrition and cancer-related issues, and to raise the profile of dietitians. We wanted to make it interactive, festive and fun for all involved. We focussed on five nutritional issues relevant to people with cancer, their carers and the multidisciplinary team looking after them. Topics included:• Ho, Ho, Ho ... How to eat healthily

at Christmas• Dietitian versus nutritionist and

alternative/complementary diets• Symptoms and side effects of

chemotherapy and radiotherapy• The ‘build-up’ diet• Alternative modes of nutrition –

nutritional supplements and enteral feeding.

Making it interactiveThere were plenty of visual aids including Macmillan and locally-written resources; nutritional supplements and feeds; fruit and

vegetables; as well as daily competitions. These included nutrition-related crosswords, guess the calories in a Supershake (1255kcal in 500ml in total) and guess the fruit or vegetable in the box. Prizes were awarded to the winners each day.

Measuring successAround 260 staff, patients and visitors viewed the display boards and entered the competitions. Given that the number of inpatient beds is small compared to other hospitals, this was a large number of people to have reached in one week. All feedback was extremely positive and indicated that the week was very successful.

One patient commented: ‘It was really useful knowing the services available and having someone to contact,’ and a multidisciplinary team member said: ‘I’ve really learned a lot this week.’

The dietetic department hopes that members of the multidisciplinary team will use the information gained to provide up-to-date, accurate first-line nutritional information to patients. We also found it was a good forum for referrals to be raised.

For patients and carers, the week provided them with basic nutrition information so they were better-informed of the importance of good nutrition during their cancer treatment.

I plan to hold the event annually, focusing on different topics each year. Doing this will help the multidisciplinary team expand their nutrition knowledge and include it as professional development, and patients will be able to get accurate nutritional advice.

Running a successful nutrition awareness week for patients, carers and healthcare staff

Related information

Macmillan has a toolkit for professionals called Promoting your service. You can access this at macmillan.org.uk/learnzone

Further information Rhian Price, Macmillan Specialist Dietitian rhian.price@wales.nhs.uk 029 2061 5888

AcknowledgementsHannah Edwards-JonesSian LewisEva Glass

Nourishing drinks

Conventional food supplements are often not well-tolerated among people on the haematology/oncology ward. We wanted to improve the experience patients had during their stay by providing a range of nutritious smoothies.

People on the haematology/oncology ward may be admitted with severe symptoms of treatment, such as neutropenia, nausea and vomiting, mucositis, diarrhoea or altered taste. Because of this, they’re at high risk of malnutrition and nourishing drinks are a way of reducing this risk.

Development and implementationWe held an initial meeting between the dietitians, the ward sister and the ward housekeeper to discuss how to take the project forward.

We then met with the hospital catering team to discuss how to source ingredients. It was decided that the ward would keep a small supply of long-life ingredients for items which we couldn’t get from the kitchen each day. Catering

Further information Lynne Cairns and Barbara Machin Macmillan Dietitians York Hospital 01904 725269 lynne.cairns@york.nhs.uk

Macmillan Dietitian Lynne Cairns finds nutritional smoothies offer a tasty alternative to food supplements

would charge the ward directly for any extra items.The food safety department gave us training and advice on preparation. The ward housekeeper would do the majority of preparation; however any staff who had completed the food safety module of annual training would be sufficiently trained to make the smoothies.

The plans were discussed with the microbiology consultant to ensure that the safety of neutropenic patients was taken into account. We also took advice from the purchasing department and infection control to ensure the blender met relevant standards. The blender was funded through the ward trust fund.

Evaluation and feedbackA variety of smoothies were taste-tested by patients. We decided to try a high-calorie fruit smoothie, a fizzy tangy smoothie for those with poor taste, and a high- calorie mocha smoothie for those who dislike fruit.

Patients were asked to provide feedback on taste, texture, smell and overall

acceptability of the trial smoothies, as well as a supplement drink. Patients rated the four different smoothies from 3–4.5 out of five, and when asked, most said they would prefer the smoothie on a daily basis. They were also rated on how easily they could be made by staff.

The calorie content of the smoothies ranged from 120kcal per 200ml glass for the citrus fizz, to 260kcal for the fruit yoghurt smoothie, and 360kcal for a ‘build-up’ smoothie.

Once the recipes were finalised, menus were given to patients and the smoothies were made available throughout the day.

The smoothies have been very well-received by most of the patients on the ward, with most having at least one glass per day. Some patients may have three or four glasses per day if they are unable to eat much.

Comments include: ‘Very very nice’ and ‘I would prefer a smoothie to a supplement any day’.

Bubbly build upIngredients1 sachet build-up shake (chocolate, vanilla, banana or strawberry)MilkBananaVanilla ice creamFruit (choose from peaches, strawberries, mango, pineapple)Cream

Nutrition Information (per 200ml glass)360 calories7g protein28g carbohydrate

26 | Mac Voice | Spring 2011

Good nutrition for young people with cancer

Further information Lisa Henry, Macmillan Specialist Paediatric Oncology Dietitian Leeds General Infirmary 0113 392 6425 lisa.henry@leedsth.nhs.uk

Lisa Henry describes her role as a Macmillan Specialist Paediatric Oncology Dietitian

Children and teenagers with cancer need adequate nutrition for normal growth and development. The better nourished the child, the better they will tolerate treatment, fight infections and develop. I work with children and families to achieve the most appropriate nutritional support for them.

Getting onboardIt’s important to consider the whole family when

giving nutritional advice; I might be asking parents to administer tube feeds at home, or I may be talking to a teenager struggling with their food intake about how to maximise their calcium intake or adjust vitamin D supplements at a critical time for bone development.I also talk to families about how to cope with side effects of treatment, food safety, and methods of nutritional support. I advise on oral nutritional support (such as food and drink fortification or supplement drinks) and tube feeding (such as nasogastric, gastrostomy or jejunal feeding), using

specialist feeds if necessary. I prescribe and monitor intravenous nutrition for severe gut toxicity, for example. I also give advice about vitamin and mineral supplements, steroid-induced diabetes, bone health and weight management.

Help for side effectsI spend a lot of time with children who have acute lymphoblastic leukaemia. (See the case study below for more). Children undergoing treatment for this can struggle to eat and drink, so I work with families to maximise calorie intake

from the start. I devise a feeding plan with the child and family, and monitor progress to ensure the plan is practical for use at home.

Support from colleaguesI work closely with Evelyn Ward, Senior Specialist Paediatric Oncology Dietitian, and the multidisciplinary team at the Leeds Children’s Hospital. We are a regional centre for paediatric oncology/haematology, including, stem cell transplantation. I’m also part of the Paediatric Oncology Dietitians Interest Group, and I audit and teach.

Jack was diagnosed with acute lymphoblastic leukaemia when he was about three and half years old. He was a fussy eater to begin with, and it was difficult to get him to eat anything on treatment. We supported his parents by giving him complete nutrition via a nasogastric tube.

I see the family regularly to make sure he is growing and the tube feed is working for everyone. His parents have always kept a food diary, which has helped to analyse his intake, ensuring he gets all the nutrients he needs for his age. He has now reached

the ‘maintenance’ phase of his treatment, when many children start eating again. Jack managed a few days without his tube and we thought we could persevere with milk, a few foods and a multi-vitamin supplement. Unfortunately he caught a virus and his tube had to be put back in.

He is much better now but still has little interest in food. In time we may have to try holding back on the feed again to see if he’ll eat, and get some support from our colleagues in the psychology team. It’s been hard work for his parents, but at least they know they’ve kept him well-nourished throughout his treatment. *Names have been changed

Jack’s case

For the public

Macmillan Cancer Supportwww.macmillan.org/cancerinformationMany people with cancer have eating problems and these web pages provide advice about how to manage them. Macmillan also produces booklets related to diet, including Diet and cancer and Recipes from Macmillan Cancer Support. Order free from be.macmillan.org.uk

Cancer Research UKwww.cancerhelp.org.ukCancer Research UK offers a wide range of information about diet and cancer for the public, including information about the role of diet in reducing the risk of cancer, and diet and eating problems in people with cancer.

World Cancer Research Fund www.wcrf-uk.org The WCRF UK website includes information about reducing the risk of cancer through healthy eating, engaging in an active lifestyle and maintaining a healthy weight. WCRF’s publications for the public can be downloaded or ordered from wcrf-uk.org/cancer_prevention/publications

For professionals

World Cancer Research Fund www.wcrf-uk.orgYou can download the WCRF’s landmark expert report – Food, Nutrition, Physical Activity and the Prevention of Cancer: a Global Perspective and companion report, Policy and Action for cancer Prevention from dietandcancerreport.org

International Agency for Research on Cancer – European Prospective Investigation into Cancer and Nutrition (EPIC)epic.iarc.frEPIC is a large study of diet and health with over half a million participants in ten European countries, including the UK. It was designed to investigate the relationships between diet, nutritional status, lifestyle and environmental factors, and the incidence of cancer and other chronic diseases. The website includes information about research activities, key findings, published studies and future research plans.

American Cancer Society The American Cancer Society publishes nutrition and physical activity guidelines every five years. These are developed by a national panel of experts in cancer research, prevention, epidemiology, public health and policy. Visit caonline.amcancersoc.org

Diet and cancer resources