jan everard - be.macmillan

Resources

New Understanding ductal carcinoma in situ (DCIS) (MAC12870)This booklet explains an early, non-invasive form of breast cancer called ductal carcinoma in situ (DCIS).

Weight management after cancer treatment (MAC12167)This booklet discusses what a healthy weight is, how to measure it, and includes self-management strategies for losing weight. It was previously advertised as Managing your weight after cancer treatment.

Updated Are you worried about cancer? 4th edition (MAC12150)The updated range of ‘Are you worried about …’ leaflets provides reassuring advice for anyone worried that cancer may run in their family. The leaflets also give information about causes and risk factors for cancer, as well as lifestyle changes that can reduce our cancer risk. There are separate leaflets for bowel, breast, ovarian and prostate cancer.

To order the latest Macmillan patient information for free, visit be.macmillan.org.uk or call 0800 500 800

Children and young people

Sharing good practice Volunteers: adding

value to services

talks about gestational trophoblastic disease – a rare

complication of pregnancy

Jan Everard

In focus

For Macmillan professionalsIssue 57 Summer 2011

Crossword

Clues across 1 Germ-killing agent

like carbolic (12)7 Previous (5)8 Vermin (4)10 Malt-flavoured ale (5)11 Firearm (5)13 Drinks tubes (6)15 Saintly victim like

Joan of Arc (6)17 Prize (5)18 Symbolic design

on a garment (5)19 A group of three (4)21 Angrily wrinkle

the brow (5)22 Cross-country

horse race (12)

Clues down

1 Specialised part of a university (10)

2 Fighter plane in World War II (8)

3 A creche or room for babies (7)

4 Mistakes (6)5 A sweet pie (4)6 Mesh fabric (3)9 Settling process

of a house (10)12 A Romeo or Don Juan (8)14 Vehicles using a highway (7)16 Sale of goods to

the consumer (6)18 Small burrowing animal (4)20 Dreary routine (3)

Answers across 1 Disinfectant 7 Prior 8 Rats 10 Stout 11 Rifle 13 Straws 15 Martyr 17 Award 18 Motif 19 Trio 21 Frown 22 SteeplechaseAnswers down 1 Department 2 Spitfire 3 Nursery 4 Errors 5 Tart 6 Net 9 Subsidence 12 Casanova 14 Traffic 16 Retail 18 Mole 20 Rut

Help

with

the co

st of ca

ncer A

pril 2011– April 2012

General enquiries 020 7840 7840

Questions about living with cancer?

Call the Macmillan Support Line 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.

© Macmillan Cancer Support, 2011. 9th edition, MAC4026_0411

Macmillan Cancer Support, registered charity in England and

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

Next planned review 2012

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.

This paper is recycled – please recycle

Macm

illan Cancer Support

workand

cancerhelpwith the

cost of cancer

A guide to benefits and financial help

for people affected by cancer

Benefit rates apply April 2011– April 2012

MAC4026_11_HWCOC cover_E9_finalproof_8-4-11_RC.indd 1

08/04/2011 17:07:31

A quick guide to benefits and financial help, 3rd edition (MAC12731)Includes new benefit rates for April 2011– April 2012.

Caring for someone with advanced cancer, 9th edition (MAC11623)

Coping with fatigue, 5th edition (MAC11664)

Help with the cost of cancer, 9th edition (MAC4026_0411)Includes new benefit rates for April 2011– April 2012.Also available in Welsh.

Work and cancer, 4th edition (MAC11675_0311) Working while caring for someone with cancer, 3rd edition (MAC11688_0311)

2 | Mac Voice | Summer 2011 Mac Voice | Summer 2011 | 3

Contents Editorial

2 | Mac Voice | Summer 2011

Improving care

The period of change stems from guidance produced by the National Institute for Health and Clinical Excellence (NICE) – Improving Outcomes in Children and Young People with Cancer.[1] The vision of wider national health and cancer policies is also key to the development of specialist cancer care for young people.[2]

There are four main themes stemming from the guidelines that aim to shape care for this patient group. These are: psycho-social and supportive care; place of care; pathways of care and the multidisciplinary team; and improving the clinical outcomes. The guidance outlines the need for principal treatment centres (PTC) to address all of the themes. There are now a number of Teenage Cancer Trust PTCs throughout the country providing specialist age appropriate care.

Further informationLaura Cooper, Teenage and Young People Information Nurse, Macmillan Cancer Support07703 677909lcooper@macmillan. org.uk

References1 National Institute

for Health and Clinical Excellence. Improving Outcomes in Children and Young People with Cancer. 2005. NICE, London.

2 Pearce S. Policy and practice in teenage and young adult cancer care in England: Looking to the future. European Journal of Oncology Nursing. 2009. 13; 149–153.

Cancer care for young people has improved considerably over the last 10 years, but it’s vital that we continue to improve care for this unique group of patients.

We welcome feedbackYou can let us know your views about Mac Voice. Simply email [email protected] 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 [email protected] or call 020 7091 2219

ContributorsLaura Cooper · Ciarán Devane Kenneth Day · Lisa Dichmont Jan Everard · Lizzie Foster Elizabeth King · Janice Koistenen Heather McMillan · Jennifer Mitchell Dan Munday · Jo Parkinson Sarah Scott · Louise Talbot Helen Tuvey · Edward Wallace Wendy White

Editorial boardCharlotte Argyle, Carers Support Manager · Kathy Blythe, Macmillan Development Manager · Colin Cosgrove, Editorial Manager · Alison Hill, Nurse Director, South West London Cancer Network · Sue Hills, Professionals Engagement ManagerBeverly Hurst, Macmillan Gynaecology /Oncology CNS · Yvonne McKenna, Macmillan Lead Cancer NurseEileen Mullen, User representativeHeather 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 · Kirsty Warwick, Communications Manager Tracy Williams, Senior Information Development Nurse

Editorial teamRosie Cotter · Sajjad ShahGenevieve Osei-Kuffuor

The NICE guidelines are being implemented across England and Wales, while the Scottish Intercollegiate Guidelines Network has adopted the guidance and care across the nation appears to be heading in the right direction. There is still a lot more to be done, but it’s an exciting time in cancer care for young people.

Whether a young person has access to a PTC or not, it’s up to us, as health and social care professionals, to support the unique challenges young people with cancer face.

You can read more about the issues affecting children and young people with cancer, and how Macmillan professionals are helping to improve care for this group, in this edition of Mac Voice. See pages 19–27.

Laura Cooper, Macmillan Teenage and Young People Information

HeLp Children And youNg PeoPle uNderstand caNCer

©Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). MAC5772_07_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 new training for frontline clinic staff, assessment and care planning, and details of the new core job descriptions for Macmillan clinical nurse specialists

Q&A 12–13 Jan Everard, Macmillan Consultant

Nurse, tells Mac Voice about gestational trophoblastic disease and the specialised support that she and her colleagues provide

Features 14 Making decisions about treatment

15 Emergency admissions

16 Spiritual care training

17 Developing a successful support group

18 Life on the road with Macmillan

Sharing good Volunteers: adding valuepractice pull-out to services

In focus: 19–27 Macmillan professionals shareChildren how they are improvingand young cancer care and support for thispeople unique patient group

Resources 28 Macmillan’s patient information booklets – new and updated resources available free to order

You can order free booklets and CDs especially for this age group at be.macmillan.org.uk or by calling 0800 500 800


Macmillan professionals shine at IJPN awards

SexJoin the new professional discussion forum about sexual rehabilitation after cancer at networks.nhs.uk

ActiveThis August, Macmillan is launching an awareness campaign called Moving Forward. It will promote the benefits of physical activity during and after cancer treatment. Contact Jo Foster, Physical Activity Manager, at [email protected]

LearnThe graduate certificate in welfare and benefits advice aims to improve the advice and support offered to people affected by cancer and long-term conditions. Recruitment is now open. Contact Dr Nicola Cunningham, Macmillan Lecturer, on 01786 466356 or email [email protected]

News News

Macmillan professionals were winners in several categories at this year’s International Journal of Palliative Nursing (IJPN) Awards.

Macmillan Nurse Sue Dewar was awarded the Lifetime Achievement Award for a career spanning 40 years.

Gill Scott, Macmillan Nurse Specialist, won the Development Award. She has been developing an end-of-life care prison project.

The End of Life Care Model of Service Team at St Luke’s Hospice in Cheshire won first place in the multidisciplinary teamwork category. Led by Anna Marie Challinor and Jane Colling, the service aims to improve the experience for patients, families and care workers.

Jayne Bates, Macmillan Palliative Care Clinical Nurse Specialist, introduced the idea of piloting and evaluating a one-stop clinic to address the frustration with delays in meeting the needs of patients. She was awarded second prize in the Palliative Care Nurse of the Year category.

Carolyn Fowler, Macmillan Education Facilitator and Marie Savage, Macmillan Lecturer in Cancer & Palliative Care were awarded third prize for the Educator of the Year Award. They developed a palliative education programme for nurses working in the community.

Congratulations to all the winners. Look out for more on their work in upcoming editions of Mac Voice.

WelfareChanges to Employment and Support Allowance and Disability Living Allowance could force thousands of people affected by cancer into poverty. Macmillan is campaigning to ensure that people with cancer are not left unsupported when they need it most. Visit macmillan.org.uk/welfare Patients can call 0808 808 00 00 for advice.

Sue Dewar accepts the IJPN Lifetime Achievement Award

An innovative project is helping families cope with the everyday effects of cancer. The Families Together Project was prompted by the case of a young woman with advanced breast cancer who had complex family needs.

Creating a care packageAs the patient’s key worker, Macmillan Breast Care Nurse Specialist Terri Jemison drew together a group of professionals to provide a package of care for the family.

‘A timely and responsive intervention was needed as discussions had already taken place about a preferred place of care and plans needed to be put in place for the care of the children,’ she said.

‘From our joint professional experiences, we found that in these situations, statutory care services can’t respond as needed, and it’s often not the patient’s choice to have involvement that is seen to be outside the patient pathway.’

Needs analysisFollowing the coordination of care for the young woman, a needs analysis was conducted by the group.

The needs analysis found that families required continuity of care within their own home and help with everyday practicalities, such as looking after children during chemotherapy and radiotherapy.

Group member Hayley Ward, Macmillan Specialist Social Worker, said, ‘Treatment programmes often leave parents tired and fatigued and caring for their children can be difficult, particularly where there is little or no family support.’

Macmillan nursery nursesHelp is now given by two Macmillan nursery nurses who enable parents to rest and recuperate during treatment. The service provides access to financial advice and grants; respite care; liaison with schools; and help with transport, shopping, and meal preparation. The service also provides a vital link between the hospital and community, which gives patients the confidence that their care is holistic and well-considered.

Going forwardThe service has been evaluated and is about to enter it’s forth year, with funding from the local primary care trust.

It is a collaboration between the Hull and East Yorkshire Acute NHS Trust, Macmillan and Home from Hospital.

For more informationContact Hayley Ward,

Macmillan Specialist Social Worker, on 0148 247 6300 or Terri Jemison, Macmillan Breast Care Nurse Specialist, on 0148 2622 013.

Tribute to early Macmillan nurseVal Hunkin, one of the first Macmillan nurses in Cornwall, died at her home in the Isle of Skye on 21 March 2011. Her colleague Rosie Hays shares some of her achievements with Mac Voice.

‘Val was instrumental in developing a community based palliative care team in Cornwall, which became one of the largest in the country. The service was formed in 1979 when Val and her nursing colleague Anne de Sausmarez began to provide specialist palliative care to adults with cancer. By the end of the 1980s, the team had grown into a multidisciplinary specialist team covering the county.’

‘A nurse specialising in palliative care was a new concept. As well as support, there was also resistance from nursing and medical professionals. Developing and leading a multi-professional group, largely on their own, in a difficult

area of care, was no mean feat. Val worked in a way which developed, supported and valued individuals, and created a close specialist team. She also supported educational programmes, particularly focusing on communication skills training, an area which until then had been neglected.’

‘Val went on to assist the development of palliative care services around the world.’

‘A very human person, Val understood how important it was to never lose sight of the basic skills of listening to people, understanding and caring.’

Alison Gaffney, who helped Val to develop and support the service, said, ‘Val made me feel as though I was making a valuable contribution to improving the care of patients and their families. Her influence on my professional and personal life was huge, and I will always remember her with great fondness and respect.’

‘Val worked in a way which developed, supported and valued individuals’

Supporting families in need

In brief


News

Information forms a key part of the care that Macmillan professionals provide to people affected by cancer. Ensuring that the information is current and accurate takes time. The information prescriptions initiative provides a library of up-to-date resources and training to help professionals to assess and meet information needs.

What is an information prescription?An information prescription (IP) is information that is selected by a professional and a patient or a carer for use at a particular point in time. The content is personalised to an individual’s needs and includes contact details for further information or support. The IP may be emailed, printed or consist of a combination of materials in different formats. In most instances, the information prescription will be generated on the NHS Choices website – nhs.uk/ips

The right information at the right time

Building links on the high street Macmillan and Boots UK are continuing to test how they can make the best use of both organisations’ expertise and community presence to help more people affected by cancer.

During Macmillan’s Cancertalk Week in February, Macmillan tested the feasibility of cancer information specialists delivering sessions directly in Boots stores. Over 100

stores hosted these sessions, ranging from half a day, to the whole week. Macmillan information specialists took the opportunity to build links between their service and their local Boots stores and customers.

One information specialist commented on the benefit of promoting the wide range of information and support that her centre offered to a new audience. Through these new relationships, some

information specialists are working with their local stores to support upcoming awareness weeks and events.

All of these are initial steps in the information element of the partnership and an evaluation is due out shortly. It will showcase the positive outcomes of this work and the challenges for both information specialists and Boots stores that will

As part of the National Cancer Survivorship Initiative (NCSI), Macmillan has supported two key initiatives that will help to improve patient experience at key transition points across the care pathway. The first of these is the Treatment Summary, which is a set template form that is completed by the oncologist at the end of treatment and sent to the GP. It provides key information for GPs including possible treatment toxicities, alert symptoms, and any actions for the GP. The Treatment Summary also includes a list of

Assessment and care planningMore than 25% of people with cancer have unmet needs a year after treatment.[1] Both oncologists and GPs have an important role to play in improving this situation.

useful GP read-codes (a coded thesaurus of clinical terms) to enable consistent coding and management in primary care.

The Treatment Summary is currently being used at the NCSI prototype test sites, having been successfully tested last year. A template is available on the NCSI wesbite – ncsi.org.uk

The second initiative is the Cancer Care Review. This is a conversation that the GP has with the patient within six months of diagnosis. Macmillan has developed read-

coded Cancer Care Review templates. Practices using EMIS or INPS systems can access the Macmillan template directly within their clinical systems. The templates encourage a more structured discussion, encompassing key areas of care, and provide practical solutions for GPs to support these discussions.

Both initiatives encourage better assessment, coordination and planning, improving the patient experience by triggering key conversations with patients and improving communication between primary and secondary care.

More informationThe NCSI is a

partnership between Macmillan and the Department of Health, supported by NHS Improvement.

Early reports on the Cancer Care Review show that:

81%of GPs surveyed find the template user friendly

71%of patients found the process very satisfactory

Reference1 Armes. Patients’ Supportive

Care Needs Beyond the End of Cancer Treatment: A Prospective, Longitudinal Survey. Journal of Clinical Oncology. 2009.

News

Various datesMiles for Macmillanwww.macmillan. org.uk/walking

11–17 July Ethnic Minority Cancer Awareness Weekwww.emcaw.co.uk

16 SeptemberOdyssey Project Survivorship Conferencewww.odyssey.org.uk

30 September World’s Biggest Coffee Morningwww.macmillan. org.uk/coffee

10 –11 November Macmillan Professionals UK event. Two events for information professionals and welfare benefits advisers will take place at the end of November.

Macmillan’s involvementMacmillan is working with the National Cancer Action Team, the Department of Health and Cancer Research UK to roll-out IPs across England. Macmillan is also working with policymakers in Wales, Scotland and Northern Ireland to develop the equivalent of IPs in these nations.

Progress madeIn England, Macmillan has funded 15 information prescriptions facilitators to work with hospitals on local processes and procedures for IPs. Macmillan has also extended funding for cancer network information managers to develop integrated approaches across primary and secondary care. Macmillan is refining the input into different organisations based on learning from the first 15 hospitals. The precise implementation in any organisation also draws on findings from the cancer patient experience survey for each multidisciplinary team.

In Scotland, Macmillan is funding three information facilitators to pilot IPs. As there is no national policy underlying information prescriptions in Scotland, they will need to demonstrate the value and feasibility of an information prescriptions programme.

Keeping up-to-dateMonthly newsletters are

available on the National Cancer Action Team Patient Experience website at cancerinfo.nhs.uk

An e-learning programme and workbook for the Information Prescriptions Service are available at macmillan.org.uk/learnzone under the ‘Professionals’ section.

For further information, please email [email protected]

need to be worked through to support future outreach. There will be more details about the evaluation in future editions of Mac Voice.

Together with Boots UK, Macmillan is looking at how it can support professionals who want to develop an ongoing relationship with their local stores. For more information, call the Boots hotline on 020 7840 4901 or email Rowena Howell at [email protected]

Mac Voice | Summer 2011 | 7


News

Working in partnership with Skills for Health, Macmillan has developed a Nationally Transferable Role (NTR) for Macmillan CNSs. It outlines the competences required to fulfil the role. The NTR is an important step towards establishing consistency across the UK and sets a benchmark that will benefit patients, commissioners, employers and employees.

To complement the NTR, Macmillan has developed a core job description and person specification to describe the skills, knowledge and behaviours required for Macmillan CNSs in bands 6 and 7. These are transferable

New core job description for Macmillan nursesThere are over 3,500 Macmillan clinical nurse specialists (CNSs) working across the UK and this number is set to increase radically over the next 10 years. Currently, many are working to different job descriptions, have different titles, and until now, there has been little agreement of what the role should cover.

Macmillan Senior Policy Analyst Jennifer Mitchell discusses the coalition government’s new cancer strategy

Improving survival rates for cancer was one of the Conservative party’s key election pledges. It’s hardly surprising then, that within the first nine months of power, the government published a new strategy for cancer – Improving Outcomes: A Strategy for Cancer – replacing the Labour party’s Cancer Reform Strategy.

across the UK and the statutory, voluntary and private sectors. The job description outlines the minimum requirements for all new Macmillan CNS posts.

There may be an opportunity to influence older job descriptions when vacancies arise or through service improvement or service re-design. Additional content can be added to the core job description according to local requirements – for example, independent nurse-prescribing or physical examination skills. As such, this is a minimum core description rather than an exhaustive list of all

the tasks and roles a Macmillan CNS might undertake.

The content of the job description should have been reflected in all new CNS job descriptions from 1 April 2011, although the format and language is likely to differ according to the partner organisation’s preferences. Macmillan is currently working on job descriptions for non-nursing roles.

More informationYou can access the NTR and

the new CNS job description at macmillan.org.uk/cns or from your Macmillan Development Manager.

Improving cancer survival rates

Cancer in the new systemCrucially, the strategy sets out how cancer care and services will be delivered and improved under the new system following the government’s major health reforms. Gone is target-setting and ‘political interference’ in the NHS, making the strategy far less directing than previous ones. Instead, it hopes to influence the new GP consortia as they plan cancer services for the future.

Under the new system, commissioners are required to commission for outcomes and not targets. The strategy acknowledges that this requires the collection of data on the outcomes of service providers, as well as more data on incidence, prevalence and expenditure. The government, as part of its information revolution, wants to make such data available to the public to aid greater patient choice in both treatment and where care is given.

The survivorship agendaWith a growing number of cancer survivors, the strategy acknowledges that more could be done to improve quality of life after cancer and calls for specific improvements in outcomes. This includes reducing the number of people who report unmet needs and increasing the number of survivors who return to work. It commends and supports the work

of the National Cancer Survivorship Initiative and specifically states that ‘care [for survivors] needs to be personalised and coordinated so that it is tailored to individuals’ needs’.

The futureSo what does this new strategy mean for patients and clinicians alike? At this stage, it’s probably too early to tell. The wider health reforms coupled with the task of finding huge financial savings mean all parties are finding it difficult to predict what the new NHS landscape will look like. Certainly, the intentions of the strategy match Macmillan’s ambitions for cancer care. If fulfilled, people with cancer should be diagnosed earlier, supported to cope with their diagnosis, and helped to get their lives back on track. But with the government’s ability to directly intervene with day-to-day care weakened, and the challenges GPs will face when commissioning for the complexities of cancer, Macmillan will be watching events unfold closely.

More informationContact Jennifer Mitchell

at [email protected] or visit macmillan.org.uk/cancerstrategy

In the next issue, we’ll look at the election results in Wales, Scotland and Northern Ireland, and the impact they may have on cancer care.

‘People with cancer should be diagnosed earlier, supported to cope with their diagnosis, and helped to get their lives back on track’

3,500There are over

Macmillan clinical nurse specialists working across the UK

Award-winning training for frontline clinic staff

‘The vital contribution of frontline staff (receptionists, secretaries, healthcare assistants), combined with good team work to improve the patient’s experience, has been largely ignored,’ she says.

The Clinic includes a film which follows several patients’ experiences at a hospital appointment, illustrating poor and good practice as a basis for reflection and facilitated discussion.

The programme gives suggestions for running a successful session and includes questionnaires,

The Clinic is a unique training programme for all clinic staff to ensure patients are treated with dignity and respect.

It won the Best Professional Education Initiative award at the Excellence in Oncology Awards late last year.

Dr Tessa Leverton, who was part of the development team, says training initiatives have traditionally focused on improving the communication skills of senior clinical staff, particularly doctors and nurses.

handouts, presentations and evaluation forms.

Evaluation at Mount Vernon Cancer Centre found that 75% of participants felt a change in attitude to people with cancer. Staff also reported improved awareness of patient dignity and felt more confident when communicating with patients. Since training started, the centre has received fewer complaints.

The programme was developed by a team of oncologists, a professional filmmaker, a psychiatrist and a person affected by cancer, with funding from Sanofi-Aventis, Roche and donations.

You can access The Clinic at macmillan.org.uk/learnzone under the ‘Professionals’ section.

The new strategy aims to improve UK cancer survival rates so they are comparable with the best in Europe. The government promises to improve prevention and early diagnosis, and increase access to new drugs for cancer to achieve this. Of note is the Cancer Drugs Fund for which Macmillan lobbied. This extra money (£200 million for the next three years in England only), should make it easier for doctors to prescribe treatments, even if they are yet to be approved by or have been rejected by the National Institute for Health and Clinical Excellence (NICE).



Planning cancer care News

Macmillan has been helping people affected by cancer for the last 100 years. But we know that the needs of the two million people living with cancer in the UK today are not being fully met. This number will rise to four million by 2030 and cancer services won’t be able to cope if we continue to work as we do.

Macmillan’s ambition to reach and improve the lives of everyone affected by cancer by 2010 was challenging, but I believe we met it. Sometimes this was achieved indirectly, for example, through a piece of research we initiated that helped form a government policy. And sometimes it struck right at the heart of the issue, like a clinical nurse specialist being there for a patient and their family throughout their cancer experience.

As we got closer to 2010, we needed to look again at our ambition and the strategy behind it.

Chief Executive Ciarán Devane shares how Macmillan aims to help people affected by cancer now and in the future

In 2009, we established what future challenges Macmillan faced, and the balance between change and continuous delivery, or business as usual. We decided on the broad parameters for changing our strategy – for example, we will remain a patient-centred charity, grow our income, and create change in the NHS, but we won’t become a paid provider to the NHS. So the future means evolution not revolution.

Developing the strategy We spent the past 18 months researching, thinking and testing ideas with more than 650 stakeholders. Thank you to the 200 Macmillan professionals who helped. Along with people affected by cancer, supporters, volunteers and staff, you helped create nine outcomes we want people affected by cancer to be able to say by 2030. These outcomes are at the heart of our future direction and underpin our strategy for the next 20 years.

The nine outcomes are:

1 I was diagnosed early. 2 I understand, so I make

good decisions. 3 I get the treatment and

care which are best for my cancer and my life.

4 I am treated with dignity and respect.

5 I know what I can do to help myself and who else can help me.

6 Those around me are well-supported.

7 I can enjoy life. 8 I feel part of a community

and I’m inspired to give something back.

9 I want to die well.

Everything Macmillan does should be aimed at improving these outcomes. In part, we will achieve this by doing more of what we already do. For example, we will support more palliative care and clinical nurse specialists, provide more and better information in different ways, and continue to lobby for changes in health policy which benefit people with cancer.

Macmillan will also need to do more of things we are beginning to test – like offering practical support in the community provided by trained and supported volunteers or partnering

‘Macmillan’s ambition to reach and improve the lives of everyone affected by cancer by 2010 was challenging, but I believe we met it’

Macmillan’s future direction

with organisations that complement us, like our partnership with Boots UK, which is helping us get cancer information on to the high street.

But even if we do more of the same, and more of the new, we won’t be able to create cancer services that will deliver our nine outcomes for the four million people who will be living with cancer in 2030. And we certainly won’t, as a country, be able to afford the high-quality, patient-centred services we all want. To achieve the degree of change we want, and to do it in a sustainable, cost-effective way, there are four things we need to do in

1 Redesigning the system Macmillan will work with

partners to change the cancer system to ensure all cancer services – in hospital and the community, providing medical, practical, emotional and financial support – are joined up and designed around individual needs. We will need to look at the whole pathway in an area, not just parts of the pathway. For example, Macmillan is influencing the redesign of services across whole geographical areas like in Northern Ireland, where we are working with the cancer network to redesign follow-up services.

2 Building cancer care teams for the future

Macmillan wants to further develop the skills of its 5,000 professionals, support your learning and development needs, and look at ways of funding new types of roles.

For example, Jan Bolton’s role as a social care coordinator at Northampton General Hospital NHS Trust was developed to address a gap in social care for people affected by cancer. Jan plans care and improves the experience of people living with cancer across health and social care services.

‘The real reward is going beyond the expectations of patients and their families – it’s what’s expected of Macmillan,’ Jan says.

The post has improved outcomes for people affected by cancer in Northampton, and an impact report after one year showed that Jan has facilitated 97 hospital discharges, influenced 10 avoidable admissions and facilitated 56 preferred place of care discussions.

3 Helping people take control Macmillan wants people

to receive the support they need to make informed decisions, manage their condition, and to know who to contact for further help – whether the person is an elderly man living alone in a rural village, or a young single mother in an inner city tower block. In either case, we need to know what help and support that person needs and how they would like to access it.

One of the new ideas in this area is Macmillan’s work with partners to pilot the Health and Wellbeing Clinics. These are one-off supportive events where people with cancer and their carers and families can access a wide range of support and services.

4 Inspiring millions of people to get involved

Needless to say, we as Macmillan cannot do this alone. Not as the 1,000 staff, not as the 5,000 Macmillan professionals. We will need to have more supporters, more volunteers and more partners.

A huge number of people are already involved with Macmillan. They help with many things, including volunteering at projects or services, for example, buddying survivors to be more physically active, or by simply talking about Macmillan’s work.

The challenge for Macmillan going forward is to increase the number of people who get involved so that our reach, particularly into the community, is as wide as it needs to be.

The four areas of radical change

a radically different way. These are:• redesigning the system• building cancer care

teams for the future• helping people take control• inspiring millions of

people to get involved.

There is more information about each of these areas in the box opposite. Looking forwardThis is a 20 year strategy that will take time, money and new approaches. We will be sharing more on the strategy in upcoming editions of Mac Voice. But in the meantime, thank you for your contribution to Macmillan today and for the contribution you will make in the future. As you hear more about our plans, I hope you too will be inspired to help us all continue to improve the lives of everyone living with cancer. I know many of you are working through challenging and difficult times, but I also know that if we keep focused on doing what we collectively as Macmillan know is right, then we will continue to do great things.

More informationContact your Macmillan

Development Manager. You can find your local contact at macmillan.org.uk/servicesimpact

Who does it affect and how is it diagnosed?It’s very rare, affecting 1 in 750 pregnancies. It occurs mostly in young women and may be diagnosed at the first dating scan. Young families can be faced with the double trauma of losing their pregnancy and requiring chemotherapy.

The much rarer choriocarcinoma affects 1 in 50,000 pregnancies and may present with excessive bleeding after the birth of a healthy baby. It’s possible for babies of mothers with choriocarcinoma to be affected, so the baby also has an hCG check.

Hydatidiform mole may be suspected on ultrasound scan but a definite diagnosis is made on histological examination of products of conception.

What protocols should be followed after a diagnosis of GTD?The Royal College of Obstetrics and Gynaecology (rcog.org.uk) has guidelines for the management of GTD.

Patients are registered for follow-up with one of three screening and treatment centres in the UK – Weston Park Hospital in Sheffield, Charing Cross in London and Ninewells in Dundee.

How does Weston Park Hospital help women with these conditions?The UK centres are unique in offering expert care – in other countries women are treated in their local hospitals.

In Sheffield, around 600 women are referred for screening, treatment and support each year.

Patients come from a large geographical area, so we provide support by email and phone, but we also run regular drop-in clinics where women have the opportunity to meet others with a similar condition.

What is the prognosis?This depends on the extent of disease, but the cure rate is very good. The UK is the leader in managing this condition and has the lowest chemotherapy rate at 5–8%, and highest cure rate at more than 98%.

How has the service developed since you’ve been in post?We recently secured funding for a nurse counsellor and nurse specialist to support teenagers and young adults referred to the service, and patients whose first language isn’t English.

It had been difficult to establish a support network for people with such a rare condition. But a patient in Sheffield, with support from the centres, developed the first molar pregnancy support website – molarpregnancy.co.uk

The website now receives around 4,000–5,000 unique visitors each month, has an online support forum, and has helped women make contact with the centres at an earlier stage in the referral pathway.

NameJan Everard, Macmillan Consultant Nurse, gestational trophoblastic disease

In post10 years, initially as nurse specialist LocationWeston Park Hospital, Sheffield

Contact0114 226 [email protected]

What is gestational trophoblastic disease (GTD)?GTD is an uncommon complication of pregnancy. It encompasses a group of disorders (masses or growths) which arise from placental trophoblasts (specialised cells of the placenta).

These disorders include complete and partial hydatidiform mole, which are benign but may progress to malignancy; and invasive mole, choriocarcinoma and placental site trophoblastic tumour, all of which are malignant.

We’re also working with the many referral units to Sheffield – over 150 – to identify key workers in GTD and establish more efficient referrals to improve the patient experience. This has proven to be very successful.

What else are you working on?We have quite a few projects on at the moment, some of which we will present at the international GTD meeting in autumn. One is comparing outcomes for Asian women with Caucasian women following chemotherapy for GTD. GTD is up to three times more common in Asian women than in Caucasian women.

How does the team keep up-to-date?As we are such a specialised team we are quite small in number, so we really enjoy the opportunity to meet up with others interested in GTD at the international congress. We meet regularly with the Charing Cross and Dundee teams to develop and improve the service.

0808 808 00 00For answers, support or just a chat, your patients can call the Macmillan Support Line free (Monday – Friday, 9am–8pm)

Mac Voice | Summer 2011 | 13 12 | Mac Voice | Summer 2011

Our weekly MDT is also vital to the success of the service.

How do you see the service developing in the future? We have just introduced nurse-led chemotherapy prescribing, which we hope will improve the treatment pathway.

We would also like to expand to offer a similar specialist service to other rare tumour groups so patients can benefit from expert care.

Who inspires you?I worked with a superb paediatric nurse director in Nottingham called Elizabeth Fradd during the 80s. She was inspirational; full of new ideas and a real go-getter. She was a great role model in the care that she gave patients and was appointed Dame Commander of the Order of the British Empire in 2009.

Further informationVisit molarpregnancy.co.uk

or chorio.group.shef.ac.uk


Collaborative research FeatureFeature Patient participation

A cancer diagnosis can be very overwhelming,

particularly when people have to make decisions about treatment shortly after receiving the news.

From 2008–10, the Edinburgh Cancer Centre trialled the decision navigation (DN) intervention[1,2] to see if it would help increase patient participation in shared decision making.

Funded by Macmillan, the DN intervention was trialled with two groups of people newly diagnosed with breast cancer and prostate cancer.

Participants were randomised to receive DN or usual care (control) – 114 people with prostate cancer (62 DN, 52 control) and 65 people with breast cancer (30 DN, 35 control).

DN participants met with a ‘navigator’ prior to initial treatment consultations to create a question list for the consultation. This was facilitated by the SCOPED model.[3] It encourages patients to think about: their situation; treatment choices; personal objectives; key people involved in their care;

evaluating risks and benefits of treatment; and deciding which treatment is best.

The navigator attended the consultation to encourage participants and consultants to incorporate the question list into the discussion and to provide participants with an audio recording of the consultation. A summary of the consultation was also sent to the participant, the GP and consultant. Each participant completed a questionnaire and a group of 20 patients and eight consultants was interviewed.

ResultsProstate cancer groupStatistical evaluation of questionnaires over six months revealed people in the DN group, when compared to people in the control group, had:• greaterconfidence

in decision making • lessregretassociatedwith

the treatment decision • lessuncertainty

associated with decisions. Breast cancer groupThere were no statistically significant results for this

group, possibly due to small sample size.

Qualitative feedbackDN participants felt that the doctor was prepared for them: ‘The fact that he was already aware [of my issues] meant that he got some answers to those questions before I had asked them.’

Participants felt actively involved in the consultation and said that DN facilitated their decision making. Listening to the CD afterwards helped reassure them.

Consultants said DN increased patient confidence and support incorporating it into cancer care.

Future workAll four prostate cancer consultants involved in the study are applying for funding to provide audio recordings to their patients. We are also looking at incorporating question listing into Macmillan roles.

The team are now assessing the longitudinal impact of DN for people with malignant brain tumours and colorectal cancer.

E mergency admissions among people with cancer,

have increased by about 50% in the last eight years, while elective admissions have only increased by 8%. Emergency admissions of people with cancer often lead to poor patient experience and a lack of timely and appropriate care after admission.[1]

They are also very costly for the NHS.

Dr Dan Munday, Associate Clinical Professor in Palliative Medicine at the University of Warwick, is leading a study which will explore the experiences of patients, carers and health professionals who have been involved in an emergency admission to hospital. The study is part of the work being done by the Macmillan Palliative and Cancer Care Research Collaborative (MacPaCC). Patients and their carers will be interviewed, and each patient will be asked to nominate community health or social care professionals and hospital staff, who will provide a

Making decisions about treatment

Emergency admissions

Further informationSarah Scott, Patient Information Navigator and Research Assistant and Dr Hacking, Clinical Psychologist, Edinburgh Cancer Centre, Western General Hospital0131 537 3742 [email protected]

References1 Belkora J. Mindful

Collaboration: Prospect Mapping as an Action Research Approach to Planning for Medical Consultations. 1997. Department of Engineering-Economic Systems and Operations Research. Stanford University: Stanford. Available from the UMI dissertation archive.

2 Sepucha KR, Belkora JK, Mutchnick S, Esserman LJ. Consultation planning to help breast cancer patients prepare for medical consultations: effect on communication and satisfaction for patients and physicians. Journal of Clinical Oncology. 2002 June 1;20 (11):2695–700. (accessed at: jco.ascopubs.org/cgi/content/full/20/11/2695.

3 SCOPED. www.scoped.org (accessed April 2011).

Further informationDr Dan Munday, Warwick Medical [email protected] 7657 5859

Reference1 Richards M. Transforming

inpatient cancer care: Transforming Care for Cancer Patients – Spreading the Winning Principles and Good Practice Conference. 7 July 2009. www.improvement.nhs.uk/cancer/LinkClick.aspx?fileticket=yobEMsMHsyc%3d&tabid=55 (accessed 9 Sept 2009).

A new study led by Dr Dan Munday will investigate people’s experiences of an emergency admission to hospital

The study is focusing on people with lung cancer because they are generally among the most disadvantaged group of people with cancer. Often, the disease is incurable upon diagnosis, a person’s condition deteriorates rapidly, and they suffer from a particularly heavy burden of symptoms.

Through the comparison between lung cancer and COPD, Dan particularly wants to explore access to services for people with similar symptoms but different diseases (some people have both lung cancer and COPD).

‘There is some evidence that people with non-cancer diagnoses have less access to community services than people with cancer,’ he says. ‘But we really want to explore this issue in-depth.’

Through this research, Macmillan will develop its understanding of how hospital management can be improved for patients following admission. Insights from the study will also help develop community and hospital services to reduce or avoid emergency admissions at the end of life.

Piloting decision navigation for people newly diagnosed with breast and prostate cancer

About MacPaCCIn the last few editions of Mac Voice, we’ve been describing the work of the Macmillan Palliative and Cancer Care Research Collaborative, or MacPaCC. Group members have a number of ongoing research projects about understanding and improving cancer care, especially in primary care.

professional perspective on the admission.

‘We recognise the extent of the problem, but we have very little understanding of patients’ own experiences of an emergency admission,’ says Dan.

‘This lack of understanding matters since there are various initiatives underway to reduce emergency admissions. The End of Life Care Strategy, for example, has highlighted the importance of preventing inappropriate admissions at the end of life.’

Amid this activity, says Dan, ‘we want to ensure that the patient’s voice is heard.’

Dan is especially interested in exploring what leads to patients’ emergency admissions, and the benefits or problems associated with the hospital stay that followed.

The study team will be recruiting 30 people with lung cancer, and comparing and contrasting their experiences with a smaller group of 15 people with chronic obstructive pulmonary disease (COPD).


Feature Support


I have just returned from the first patient-led oesophageal support

group to be set up in Lincolnshire for 10 years. Looking back it has been quite an interesting journey to get to this point.

In December 2009, new in post, I was wondering how to best look after my patients. I attended a Macmillan Learn and Share Workshop where a physiotherapist talked about a course they had started for people with lung cancer who had just completed their treatment. It aimed to help smooth the transition back to normal life. It sounded like a terrific idea and one that I could adapt to help my patients in Lincolnshire.

I suggested this to the Cancer Lead Nurse and my Macmillan Development Manager. They arranged a meeting with Ruth Wilson, Macmillan Involvement Coordinator. This resulted

in an invitation to the upper GI patients in our trust to attend an information day.

On the dayThe event took place last September and 66 people attended. Ruth coordinated the day and I circulated and chatted to people along with 10 helpers. The leader from the North Lincolnshire Support Group, Macmillan information officers, nurses, members of the Patients and Carers forum, a physiotherapist, a dietitian, benefits advisers and the Lincolnshire Council Carers Group all came to share their expertise and experience. Judging by the noise in the room it was as if everyone had known each other for a lifetime, even though many had just met. Before the event I was concerned with filling the programme with informative talks, but I realised that there was real value in just

sharing with other people in a similar situation.

Assessing need At the end of the day I asked people what support they wanted in the future. They were enthusiastic about information days and support groups, as well as a course at the end of treatment. I then asked for volunteers to form a steering group. My heart sank as the room went quiet; I hoped that the silence was on account of the heat and because everyone was tired. After the meeting one lady came up to me rather hesitantly and said that she and her husband would consider it. Despite an excellent day, I went home thinking it would probably not result in any of the developments I had hoped for.

Group planning Gradually people contacted me and we formed a core group of 12 people and started planning a support group. Lincolnshire is a large county and we wanted to start two separate but linked groups – one in Grantham and the other in Boston.

One concern voiced by several people was about dealing with potential loss within the group. To help us manage problems and prepare us to form a sustainable group, I applied to Macmillan for a trainer to run a course for us on setting up support groups. Sabire Dmagoz spent two

Developing a successful support group Lisa Dichmont, Macmillan Upper GI Nurse, reflects on setting up an oesophageal support group

W ithin palliative care, spirituality and spiritual

care is very much in focus. Both national and local initiatives are asking professionals to pay attention to this dimension of care.

We chose to explore spirituality and spiritual care through a two-year training programme at the Interfaith Seminary.

The seminary trains people from all walks of life, serves people of all faiths and none, celebrating and embracing all traditions and human experience.

Our reasons for studying with the seminary were slightly different, but in essence, we wanted to be more effective in our roles; to recognise the potential there is in human relationships when we allow ourselves to be fully attentive and open; and to not shy away from difficult situations where we feel

empty-handed, despite all our clinical skills.

The training is part-time, and while there are clear academic requirements in the curriculum, much of the training is experiential. The first year focuses on studying the world’s religions and mystic traditions and developing personal spiritual practice and self-enquiry. The second year builds on this, but also includes creating and conducting ceremony and ritual to honour significant life events. A further strand is spiritual counselling.

At its conclusion, each successful student is ordained and given the title of Interfaith Minister.

The training’s impactThe impact of taking this course and becoming interfaith ministers has been significant for each of us. This is both in terms of our professional work and

our personal development, which are interwoven. In our daily work we are much more aware of the spiritual dimension and how to honour and address that. We feel better able to take part in the difficult and distressing conversations and situations that take place in cancer and palliative care.

We have become increasingly aware of our own spirituality, too. We feel more settled and at home in the world, distilling our own life values, with an enhanced awareness of what it really means to be of service and to help others.

We also recognise that we have the ability and the settings in which to help raise awareness of spiritual care with other colleagues, in either formal or informal education. Neither our, nor the seminary’s aim, is to take the place of existing spiritual provision, but to enrich and support it.

SupportAs with many other healthcare skills, a lot of the principles of spiritual care can be learned and there is an increasing number of agencies able to help professionals with this.

Our advice to anyone wanting to improve their spiritual care is to take care of them self first and to start to be aware of what spirituality means to them.

Online information www.interfaith

foundation.org.uk

Spiritual care training

Further informationKenneth Day, Macmillan Uro-Oncology CNSEaling Hospital NHS Trust020 8967 5000, ext [email protected]

Lizzie Foster, Macmillan Palliative Care CNS Macmillan Palliative Care Team for NE Lincs Care Trust Plus01472 [email protected]

Feature Support

Kenneth Day and Lizzie Foster, Macmillan clinical nurse specialists, explored their spirituality through a two-year training programme – here they describe the impact it has had on their care

‘We feel better able to take part in the difficult and distressing conversations and situations that take place in cancer and palliative care’

very helpful days with us. Some sessions were quite emotional as people relived phases of their disease and voiced their fears, but by the end we had formed a cohesive group where everyone felt free to contribute and share.

Positive responseThe first Grantham group was held in February. The turnout was excellent and people mingled, chatted and made plans for future meetings. The Boston group met for the first time in mid-June.

There is little doubt in my mind that people with common problems can offer each other invaluable support. I am very hopeful that these groups will be a helpful resource for people in Lincolnshire.

Related informationGood practice in

running your group can be found at at macmillan.org.uk/learnzone

Further informationLisa Dichmont, Macmillan Upper GI Nurse Pilgrim Hospital, Boston 01205 445916 [email protected]


Information and support Feature

Further informationHelen Tuvey,Lead Mobile Information and Support Specialist Macmillan Cancer Support 0190 475 6406 [email protected]

I n the three years since Beryl – one of Macmillan’s mobile

cancer information centres – began touring, its information specialists have helped over 30,000 people from all walks of life. The mobile, which tours Northern England, has visited a variety of different communities and settings – from workplaces to mosques and city centres to small market towns.

The impact of the service is evident, from the woman

of Macmillan’s services and campaigns.

The appeal of the service is that it’s convenient and anonymous. Any member of the public can walk in and ask questions in the knowledge that it will be confidential and that it can just be a single encounter. The mobile has a small room where information specialists can offer a more private consultation for emotional support or when discussing more personal issues.

Team workTo be able to provide such a service requires a great deal of work behind the scenes. The team coordinator works with cancer networks across the region to identify information gaps and communities where the mobile will have the greatest impact. Another crucial member of the team is the driver. He gets the bus in position, sets up the external information displays and is responsible for the health and safety of everyone in the centre.

Life on the road with MacmillanThe impact of a mobile cancer information centre

who saw the bus pass her by and decided to offer her time as a volunteer, to the man from France who visited the team on his holiday and made the effort to get back in touch to say how much he appreciated their support. He felt much more confident and empowered when asking his consultant questions about his treatment.

Reaching communitiesThe Northern England service was introduced in 2008 to provide high-quality information to the public and to effectively target hard to reach communities. These include men, black and minority ethnic groups, older people, and adults with learning difficulties. The service addresses some of the barriers communities face when accessing cancer services by taking free information resources and the knowledge of our information specialists into the heart of these communities. The mobile also raises awareness

The specialists on board never know what enquiry is going to come through the door, but are skilled in supporting visitors and are able to signpost them to local support once the mobile has moved on.

The Northern England service has proved to be so successful as a means of giving information and support that Macmillan has since introduced two new mobiles – one in the East Midlands and one in Central South West of England. Together with the London, Anglia and South East mobile team, the four mobiles cover the whole of England.

Beryl’s teamThe team includes Helen Tuvey, Michael Lockey, Cara Law, Debbie Smith, Isabel Smith, Chantal Lowson and Geoff Greig.

More informationFind out when a

Macmillan mobile cancer information centre is in your area at macmillan.org.uk/mobile

ChIldreNyoUnG

and

PeoPLe

In this section 20 Helping young people

with complex needs Wendy White, Macmillan Lymphoma and Young Persons’ Clinical Nurse Specialist

21 Delay in diagnosis Laura Cooper, Teenage and Young People Information Nurse

22–23 Give us a break Elizabeth King, Principal Psychologist

24–25 Supporting children with central nervous system tumours Dr Louise Talbot, Macmillan Clinical Psychologist

26 I’ll huff and I’ll puff … but I can’t blow your house down Heather McMillan, Macmillan Cancer Information Support Worker

27 Children and young people resources


Around 2,100 people between the ages of 13 and 24 are diagnosed with cancer every year in the UK and survival rates continue to lag behind those of childhood cancers. Reasons for this include poor clinical trial accrual, aggressive tumour biology, poor adherence to treatment protocols and late diagnosis.

All of these issues must be addressed, but delay in diagnosis is an important factor to look at.

Young people get cancer tooThere’s a common misconception among the public and professionals that young people are immune from getting cancer because of their age. In fact, the tumours that this age group get, while rare, are often more aggressive than those in children and adults. Delays in cancer diagnoses aren’t confined to this age group, but there is a lack of expectation from doctors that young people get cancer. The symptoms that an individual may present with are far more likely to be attributed to a more common cause, but cancer must not be excluded if symptoms

persist. Young people with cancer often present to their GP many times and over a long period of time before further tests are sought.

Assessing symptomsSymptoms can be vague and misdiagnosis of sports injuries and hormonal imbalances are examples of the explanations given by doctors. Reassurances from professionals that these diagnoses are correct can be readily accepted by young people. While a cancer diagnosis is rare in this age group, if the symptoms fail to improve, it’s important to remember that cancer may be a possibility. A delay in diagnosis can lead to family anguish, more advanced disease, and distrust of medical professionals by both the patient and family.

Taking responsibilityYoung people also need to take responsibility for their own health to help shorten the time between presentation and diagnosis. There is resistance from young people to seek medical advice when symptoms appear and parents are less able to enforce visits

to the doctor on their child in the teenage and young adult years. Young people may fear the outcome of their symptoms and may not have the knowledge to recognise their symptoms as being potentially serious or life threatening. What you can doWe must try to educate young people of the potential signs and symptoms of cancer and empower them to seek further advice. However, it’s important to balance increasing awareness and subjecting young people to unnecessary tests and procedures.

In places such as colleges and universities it may be beneficial to produce clear guidelines for referral of suspected cancers within the given age group.

We must take young people seriously. If symptoms don’t improve after an initial diagnosis of a benign condition, further investigations should be carried out.

We must do everything we can to reduce potentially fatal delays in cancer diagnoses and improve the survival rates of this unique patient group.

Further informationLaura Cooper, Teenage and Young People Information Nurse Macmillan Cancer Support07703 [email protected]

ReferencesAlbritton K and Eden T. REVIEW: Access to Care. Pediatric Blood & Cancer. 2008. 50; 1094–1098.

Eden T. Addressing delays in diagnosis. 2010. Teenage Cancer Trust Conference Presentation.

Gibson F, et al. Report to CLIC Sargent. 2003. Grinyer A. Young People Living With Cancer. 2007. Open University Press, Maidenhead.

Further informationWendy White,Lymphoma and Young Persons’ Clinical Nurse Specialist Haematology & Oncology Out Patients Department Queen Alexandra Hospital 023 9228 6000, ext 4763, Bleep 0102 [email protected]

Reference1 National Institute for

Health and Clinical Excellence. Improving Outcomes in Children and Young People with Cancer. 2005.

Laura Cooper, Teenage and Young People Information Nurse, explains why late diagnosis is a real issue for young people with cancer

Delay in diagnosis

Related informationSometimes it’s cancer

is a DVD produced by jimmyteenstv.com It talks about some of the signs and symptoms of cancer in young people. I’m still me is a guide for young people living with cancer. You can order it for free at be.macmillan.org.uk or call 0800 500 800.

As a Macmillan lymphoma and young persons’ clinical nurse specialist, I’m a key worker for the growing number of people diagnosed, treated and living with lymphoma. I support this group of patients and their families by coordinating the necessary investigations and care, from diagnosis to follow-up.

My role was established because Portsmouth Hospitals NHS Trust needed a nurse working in adult oncology to help implement the teenage and young adults improving outcomes guidance.[1] Paring this position with a focus on lymphoma was thought to be a suitable combination because lymphoma is one of the most common forms of cancer for teenagers and young adults.

I work closely with teams managing young people with cancer in adult and paediatric services to ensure their supportive care is well-managed within the resources available.

Covering a population of around 600,000, we see between 12 and 14 teenage and young adults (TYA) diagnosed with cancer each year – small numbers with complex needs.

I have to prioritise my work to fulfil both roles, which is often quite a challenge. All young people are offered psycho-social support by the TYA Clic Sargent team, and their cases are reviewed at the principle treatment centre’s TYA multidisciplinary team meeting. I make sure there is prompt communication from the time of malignancy suspicion to diagnosis to prevent delay of treatment if transfer of care is necessary. I am also the key worker for people without a site-specific CNS, sharing this duty with other CNSs.

Service reviewThe oncology young persons’ services (for 16–24 year olds) are currently under review with ongoing consultations. I’m involved with local and network

planning to deliver care in the future that adheres to National Institute of Health and Clinical Excellence guidance. Eventually, working within these guidelines, everyone between 16 and 19 will be referred for treatment to the principle treatment centre at Southampton (with shared care locally) and those between 20 and 25 years will be given the choice of treatment in age appropriate facilities at the local trust or the principle treatment centre.

Work experiencePrior to this role, I was a head and neck oncology CNS for eight years, and before that, an NHS school nurse covering everything from assessments, child protection and health education. I have worked extensively with and studied the health needs and development of children and the TYA age group.

In developmentI’m currently developing pre-chemotherapy introductory group sessions based on feedback from a recent patient and family focus group. The aim of these sessions will be to help patients and families identify coping skills and introduce relaxation techniques with guided imagery and visualisation. All people diagnosed with cancer in the trust will be invited to attend to encourage peer support.

Related informationMacmillan has booklets

about Hodgkin lymphoma and non-Hodgkin lymphoma. You can order these at be.macmillan.org.uk


Helping young people with complex needsWendy White’s dual clinical nurse specialist role aims to ensure supportive care for teenagers and young adults with cancer


Mac Voice | Summer 2011 | 2322 | Mac Voice | Summer 2011

significantly enriched by an extensive consultation exercise within the local authority. This included gathering the views of young people and parents who participated in the pilot groups.

The group sessionsUp to six young people meet for eight one-hour weekly sessions within a school or healthcare environment. The group sessions are normally led by two staff. Throughout the group sessions, young people have the opportunity to tell their story and speak about their feelings. They learn to understand the changes in their lives and how they feel about these. They also gain support from other young people who have been through similar experiences. The young people identify their strengths and use goal setting to move towards the future.

The launchIn November 2009, South Lanarkshire Council hosted a national launch of Give us a break! in collaboration with Macmillan and NHS Lanarkshire. The launch was covered by Scottish Television and a young person involved in a Give us a break! group spoke movingly on television about the positive impact of attending the group.

SupportIt’s likely that without the generous financial

Bethany McVeigh, 15, of East Kilbride, attended the Give us a break! programme at St Andrew’s and St Bride’s School following the death of her father.

‘When my dad died, I was really upset and I found it really hard to come to terms with. One of my teachers suggested I attend the group, which I did every week. I didn’t really know the people in the group when I started going, but I’m really good friends with some of them now,’ Bethany says.

‘Everyone in the group was around the same age as me and I found it really easy to talk to them about how I felt about my dad’s death. It helped a lot to know that there were other people who felt the same and I wasn’t the only one this had happened to.’

Bethany’s storyChristopher Rinn, 15, of East Kilbride, attended Give us a break! after he struggled to come to terms with the death of his mother three years earlier, and then later his grandmother. He was referred to the group by his guidance teacher at St Andrew’s and St Bride’s School.

Christopher, who is now giving talks at his school to bereaved children on the benefit of attending the group, said, ‘When my mum died, I felt sad and a bit depressed. This was something which really hit me when my gran also died a year later.

‘The group really helped me though, because although we spoke about what had happened and why we were sad, what we really focussed on was on our strengths and how to make the most of them. I got a lot of confidence from it and it made me feel a lot better.’

Christopher’s story

‘Everyone in the group was around the same age as me and I found it really easy to talk to them about how I felt about my dad’s death’Bethany McVeigh, 15

Principal Psychologist Elizabeth King explains how her service developed an award-winning programme for young people who have experienced loss, change or bereavement

Give us a break

Further informationElizabeth N KingPrincipal PsychologistSouth Lanarkshire Council0169 842 [email protected]

support and wonderful encouragement from our Macmillan colleagues, Give us a break! would not be in its present form, nor would there be the vision for a national roll-out. The knowledge base of key practitioners would not have been extended, and young people would not have benefitted from being involved in the Give us a break! groups.

The programme is receiving national interest and won the best team award from the Convention of Scottish Local Authorities in March. Visit awards.cosla.gov.uk for more information.

Give us a break! is an eight-week programme for young people aged 10–14 who are coping with negative change in their lives. Produced by South Lanarkshire Council Psychological Services and NHS Lanarkshire, the programme acknowledges that loss and grief are a normal part of life and are unique to each individual. It supports young people in managing the emotional consequences of loss. The real value of the programme lies in its flexibility, and the solution-focused theoretical framework that underpins it.

Identifying gapsThe idea for a programme came from a locality multidisciplinary scoping exercise which I attended in 2007. It was aimed at highlighting gaps in provision within South Lanarkshire Council. South Lanarkshire is the fifth largest local authority in Scotland and encompasses a diverse mix of urban and rural environments. We were asked to identify three areas of concern and everyone raised the lack of bereavement resources.

It was acknowledged there was a wealth of research available along with existing high-quality materials, but it was felt that these didn’t meet the full range of social and emotional needs of young people.

Collaborative workingSitting next to me was a colleague I’d never met before – Jean Aitken, a Macmillan Palliative Care Counsellor working within NHS Lanarkshire. Inspired by the strength of feeling expressed by the practitioners, Jean and I made a commitment to work together to address this gap. We knew we would both have to turn to our organisations for help – Jean to Macmillan and me to the local authority.

Over the next two years, many colleagues contributed generously to the development of the programme. The programme pack contains an introduction and general information; notes and lessons plans for each week; resource sheets for all activities; and notes on working with parents. The published materials were

A number of Scottish local authorities have requested training and we have an excellent and passionate training team, which includes: Anne Murphy (one of the original authors) and Lisa Cunningham, Educational Psychologists at Psychological Services and Tracy Stephen, Clinical Team Manager at NHS Lanarkshire.

The DVD we made helps colleagues understand what the programme offers and a Give us a break! website is in development.

More informationContact enquiries@

slcpsych.org.uk

Central nervous system tumours (CNST) account for around one quarter of all cancer diagnoses in children and are the second most common childhood malignancy. Childhood CNSTs differ from those seen in adults in their incidence, histology and location.

Children who are diagnosed with a CNST face many survivorship challenges, including problems with neurological function, epilepsy, vision, hearing,

MDT meetings, ward rounds and case reviews, and am involved with the ongoing teaching and training schedules arranged for RMCH and community nursing staff.

Psychological interventionThe details of the exact psychology intervention packages vary from one child to another depending on age, diagnosis and morbidity following treatment. The majority of families need help in one or a combination of the areas highlighted in Figure 1.

Positive feedbackThe feedback we’ve had from members of the MDT, including consultant oncologists, has been very positive. It has highlighted the importance of education and advocacy for the children and families involved in the neuro-oncology service.

Feedback from patients as part of a service evaluation using the Commission for Health Improvement Experience of Service Questionnaire[4] was also very positive. Examples of comments received include:

‘My child was able to talk freely about her concerns to someone impartial to the family and all advice given to her was helpful.’ Parent of 17-year-old.

‘I felt that I was taken seriously and each problem that was raised was dealt with individually. I also felt that the person I saw cared about my progress, and talked to me both as a patient and a person.’ 17-year-old patient.

‘The counsellor was very friendly and approachable. She got on well with my daughter from the start and she looked forward to her visits.’ Parent of 13-year-old.‘I feel like [the psychologist] really cared and step by step she helped me solve any problems I had.’ 13-year-old patient.

Further informationDr Louise Talbot,Macmillan Clinical PsychologistRoyal Manchester Children’s Hospital 0161 701 5683 [email protected]

References1 Anderson D M, Rennie

K M, Ziegler R S, Neglia J P, Robison, L R, & Gurney J G. Medical and neurocognitive late effects among survivors of childhood central nervous system tumors. Cancer. 2001. 92 (10); 2709– 2719.

2 NICE. Guidance on Cancer Services: Improving Outcomes in Children and Young People with Cancer: The Manual. 2005. London: National Institute for Clinical Excellence.

3 Mitchell W, Clarke S & Sloper P. Survey of psychosocial support provided by UK paediatric oncology centres. Archives of Disease in Childhood. 2005. 90 (8), 796–800.

4 Commission for Health Improvement. Experience of Service Questionnaire. 2002. Retrieved 18 June 2008. (accessed at www.health carecommission.org.uk).

Emotional support needs

• Concernsoverchangedappearance.

• Socialanxietyandpeer relationships.

• Healthanxiety.• Parentalanxiety.• Difficultyestablishing

independence.• Lowmoodandself-esteem.• Proceduralanxiety.

Neuro-psychological assessment and return to school

• Baselineassessmentofabilities post-treatment.

• Liaisonwithschoolsaboutactual or expected learning problems post-treatment.

• Involvementinspecialeducational needs assessments and reviews.

Behaviour problems

• Understandinganddealing with treatment related behaviour problems, eg steroid induced.

• Helpingparentsputtherules back in place.

• Dealingwithtantrums and tears.

• Dealingwithrewards,bribes and presents.

Supporting children with central nervous system tumours Dr Louise Talbot, Macmillan Clinical Psychologist, talks about the psychological needs and specialist support offered to this group of children

short stature, endocrinopathy (hormone problems), and psycho-social challenges.[1] Skilled neuro-rehabilitation often makes the difference between a child who grows into an independent adult and one who needs complex care.[2]

The importance of psychological support and care for this group has been highlighted in NICE guidance,[2] yet remains a significant area of unmet need in many paediatric oncology services.[3]

The neuro-oncology serviceRoyal Manchester Children’s Hospital (RMCH) is a UK Children’s Cancer and Leukaemia Group (CCLG) treatment centre. Around 30 children are diagnosed with CNSTs and treated within the centre each year.

The clinical psychology service within neuro-oncology was set up in July 2009 after Macmillan funded a full-time clinical psychologist. This followed a successful partnership between Macmillan and Central Manchester University Hospitals Trust that delivered a pilot project of psychological interventions to children with CNSTs and their families.

As a Macmillan clinical psychologist at RMCH, I provide psychological and neuro-psychological assessment, support, expertise and interventions for all children and young people diagnosed with CNSTs and their families. The service provides psychological care to children and young people up to the age of 19, throughout the cancer pathway.I work closely with the psycho-oncology multidisciplinary team (MDT) at RMCH. I also attend weekly

Going forwardFuture plans for the service include implementing some of the ideas given by secondary school children about group support, along with trials of goal-based evaluation methods for intervention. The service is committed to research and development and is pleased to welcome a trainee clinical psychologist into the team to conduct research on self-esteem in adolescent cancer.

Related informationMacmillan has fact sheets

about children’s cancers and a booklet called Understanding brain tumours. Visit be.macmillan.org.uk or call 0800 500 800 to order.

‘I felt that I was taken seriously and each problem that was raised was dealt with individually. I also felt that the person I saw cared about my progress, and talked to me both as a patient and a person’17-year-old patient

‘My child was able to talk freely about her concerns to someone impartial to the family and all advice given to her was helpful’Parent of 17-year-old


Figure 1



title News

Mac Voice | Summer 2011 |

Children and young people resources

I offer educational sessions to schools in Bassetlaw as a fun and interactive way for children to learn more about cancer risk and how to live a healthy lifestyle. I feel it’s never too early to reinforce relevant health advice.

When I developed the sessions, I knew they had to be fun and not frightening. So with this in mind, I re-wrote stories that the children would be familiar with.

In one tale, the big bad wolf becomes a smoker who can’t blow the pigs’ house down because he has a chronic shortage of breath. And the three little pigs are all unfit with various lifestyle-related problems.

Explaining cancer On reviewing my service’s offerings, I felt I needed to extend the message to give the children some understanding of cancer itself. I wrote my own story about Katie, a little girl whose daddy has cancer. It follows Katie from the day her mummy and daddy try

to explain the disease, to her daddy getting better. The story focuses on some of the questions I get asked by young children, such as:• Iscancercontagious?•Whatisatumour?•Willyoudiefromit?

By using these stories I’ve been able to mix relevant health information with positive lifestyle messages, and hopefully answer some of the questions troubling younger people. So far the feedback has been very encouraging.Billy Cooper, five, said, ‘It was fun. I’m going to ask my daddy not to smoke anymore.’

Young peopleI’ve also been promoting the importance of breast and testicular self-examination to school and college students. I use prosthetics to explain self-examination techniques along with interactive quizzes and discussion to reinforce the importance of a healthy lifestyle.

Information for adultsDelivering the sessions in schools gave me an insight into the positive impact these lessons could have in the workplace. I wrote to every workplace in Bassetlaw and found there was a lot of interest.

I’ve been pleasantly surprised by the enthusiasm and cooperation shown by employers, ranging from Bassetlaw power station, which has nearly 1,000 employees (mostly male), to smaller business with a mixed staff of seven.

Helen Kay from Cook & Mason insurance brokers said, ‘The session was excellent, set at the right level, and I’ve received very positive feedback.’

Since delivering these sessions, over 2,000 people have been taught to carry out self-examination to check for abnormalities.

Related informationMacmillan’s website

whybother.org.uk has a healthy lifestyle section written for children.

Further informationHeather McMillan,Macmillan Cancer Information Support Worker, Bassetlaw0177 786 [email protected]

I’ll huff and I’ll puff … but I can’t blow your house downHeather McMillan, Macmillan Cancer Information Support Worker, reinvents classic fairy tales to help children understand cancer

‘I’m going to ask my daddy not to smoke anymore’Billy Cooper, five

Resources

Macmillan Cancer Supportwww.click4tic.org.ukClick4Tic provides honest cancer information for people aged between 12 and 25 years. www.whybother.org.ukSimilar to Click4Tic, Why Bother? is written for children under 12.Macmillan bookletsTo order from the range of booklets for children and young people, visit be.macmillan.org.uk or call 0800 500 800. Macmillan also has booklets for parents, including A parent’s guide to children’s cancer and Talking to children when an adult has cancer.

Children’s Cancer and Leukaemia Group (CCLG)www.cclg.org.uk The CCLG is an association of health and social care professionals involved in the treatment and care of children and younger teenagers with cancer. It’s committed to researching and developing cancer treatments for this age group. Information provision for patients and families is a core activity. CCLG produces a leaflet called A guide to childhood cancer resources online. It aims to help parents and others caring for children to find reliable information about cancer care and treatment for young people and children. It was last revised in January 2011.

Teenagers and Young Adults with Cancer (TYAC)www.tyac.org.uk This membership organisation helps all professionals involved in the care of young people with cancer to work

together to improve knowledge and services. TYAC raises awareness of the need to provide appropriate care for young people by improving communication between stakeholders; advocating for teenagers and young adults and professionals; and promoting research, education and information.

Automated Childhood Cancer Information System (ACCIS)www-dep.iarc.fr/accis.htm This is a project supported by the European Commission. Its objective is to collect, present, interpret and disseminate data on childhood cancer in Europe.

International Society of Paediatric Oncology (Société Internationale d’Oncologie Pédiatrique or SIOP)www.siop.nl Every year, SIOP runs a scientific meeting on all aspects of paediatric oncology. SIOP also sponsors regional and continental meetings to promote the exchange of information and good practice in paediatric oncology.

Children’s Oncology Group (COG)www.childrensoncologygroup.org This is the world’s largest, cooperative children’s cancer research entity. It brings together treatment centres, doctors, laboratory scientists, nurses, psychologists and others working to beat cancer in children, adolescents and young adults. The organisation based in the United States and membership is open to all professionals. It also hosts curesearch.org – a source of high-quality information for parents and families.

jan everard - be.macmillan

Documents