Mac Voice winter 2013 - be.Macmillan...Steve Richards, Director of Professional Engagement Macmillan...

For Macmillan professionalsWinter 2013Issue 67

Sharing good practiceImproving the quality of cancer

care in primary care

New section Communication skills

‘Sometimes people come in very distressed and

leave feeling like a weight has been lifted’

Macmillan Psychosocial Support Worker

Sarah Bunce

www.macmillan.org.uk/macvoice 3

Further information

Steve Richards, Director of Professional Engagement

Macmillan Cancer Support

020 7091 2423

[email protected]

Visit our websiteAll the news stories and features from this issue are now available at macmillan.org.uk/macvoice If you’d like to stop receiving a paper copy of Mac Voice, email [email protected]

Writers wanted

Mac Voice is for you. You can write about the topics that matter to you and share your knowledge with others. You don’t have to be an experienced writer to get involved – simply email [email protected] or call 020 7091 2219

Contributors

Elissia Albertella • Julian Barwell Sarah Bunce • Charles Campion-Smith Kim Diprose • Natalie Doyle • Gemma Fagbadegun • Richard Henry • Sarah James Meg Kirby • Maartje de Laat • Jamie Logan Sheila Markham • Philippa Nisbet • Ruth O’Connor • Jackie Pooler • Steve Richards Erica Sheppard • Lorraine Sloan • Fiona Smith Zoe Smith • John Sweeney • Rebecca Turner

Editorial board

Charlotte Argyle, Carers Support Manager Kathy Blythe, Macmillan Development Manager • Alison Foster, Macmillan Clinical Nurse Manager and Lead Clinician for Specialist Palliative Care • Alison Hill, Trust Lead Cancer Nurse • Beverly Hurst, Macmillan Gynaecology/Oncology CNS • Tim Iveson, Macmillan Consultant Medical Oncologist Susan Llewelyn, Macmillan Information Facilitator • Yvonne McKenna, Macmillan Lead Cancer Nurse • Barry McVeigh, Workstream Lead (CRM, Systems & Processes), Professional Engagement team • Heather Nicklin, Macmillan Specialist Palliative Care Social Worker • Debbie Provan, Macmillan Project Lead Dietitian • Helen Tyler, Therapies Service Manager • Tracy Williams, Senior Information Development Nurse

Editorial team

Beverley Howard • Genevieve Osei-Kuffuor Graham Pembrey • Sajjad Shah

The views expressed in Mac Voice do not necessarily represent the views and policies of Macmillan Cancer Support. Any references to websites, books and journals do not necessarily imply endorsement from Macmillan Cancer Support. Although we do our best to make sure that all of the information in the magazine is accurate and up-to-date, neither we, nor any other party involved in producing the magazine will be liable for your use of its content.

© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). MAC5772_10_13

Printed using sustainable material. Please recycle.

News

4–11 A new cancer centre in Stevenage, carers in crisis, highlighting the consequences of treatment and more

Q&A

12–13 Macmillan Psychosocial Support Worker Sarah Bunce discusses her role at Basildon Hospital

Improving communication skills

14 In our first in a series of articles on communication skills, John Sweeney discusses a course on information giving in cancer care

Features15 Legal help at end of life16 Let’s talk about work18 Post-treatment support19 Looking back20 Supporting families with cancer

Sharing good practice pull-out

Primary care after cancer treatment: helping general practice do more

In focus: Celebrating 20 years of Macmillan cancer information and support services

As Macmillan toasts two decades of its dedicated information and support services, Macmillan professionals discuss their latest schemes and innovations

Resources

28 New and updated information from Macmillan

Contents Editorial

Rewarding achievementsin cancer care

On 7 November, we came together at the Macmillan Professionals Excellence Awards in Manchester to recognise and reward Macmillan professionals who, in extremely challenging times for health and social care, have made exceptional contributions to improving the lives of people affected by cancer. The eight individual and two team winners have demonstrated best practice in cancer services.

More than 400 Macmillan professionals, their colleagues and employers, as well as representatives from Macmillan, leading healthcare institutions and the media, joined the award winners to celebrate their outstanding achievements. The event, hosted by British Olympic rower Greg Searle, provided great networking opportunities within and beyond the Macmillan community.

Congratulations once again to all the winners, but also to everyone who was nominated and shortlisted for the awards. The awards are only in their second year, but we were overwhelmed by the breadth of applications of exceptional standard. It was truly difficult to choose winners from a pool of so many inspiring professionals. Turn to page 8 to find out more about the 2013 winners. You can also view video case studies of the winners at macmillan.org.uk/professionalsawards

Steve Richards, Macmillan’s Director of Professional Engagement, looks back at this year’s Macmillan Professionals Excellence Awards and Event

2 Mac Voice Winter 2013

The awards ceremony was one of my highlights of the two-day Macmillan Professionals Event, which welcomed Macmillan professionals from across the UK.

As part of the event, I delivered an update on our plans for professional engagement. This featured alongside expert sessions from speakers from Manchester City Council, Greater Manchester Cancer Services Provider Board, and a motivational speech by Greg Searle. There was a full programme of workshops, as well as an exhibition showcasing our tools designed to support you in your roles.

‘ Greg Searle’s speech captured the tone of the event: inspiring and reinvigorating’ – a delegate

The whole event provided us with an opportunity to listen to you and to learn from your experiences. It was great to meet so many of you, to find out more about your work and how we can support you to deliver the highest possible quality of care.

I’m looking forward to working with you over the next year and beyond to make sure Macmillan helps even more people affected by cancer.

If you were unable to attend the event, an event summary is available at learnzone.org.uk/professionals


Half a million cancer survivors face poor health

In briefNews

200,000 cancer survivors are estimated to be left with long-term pain after surgery, radiotherapy or chemotherapy.

Our report, Throwing light on the consequences of cancer and its treatment, highlights that at least one in four people living with cancer (more than 500,000 in the UK) experience a wide range of long-term health conditions after their treatment for cancer. Many of these problems can persist for at least ten years.

The report looks at the long-term effects of cancer and its treatment and shows that cancer survivors have an increased risk of other serious conditions. For example, women living with or after breast cancer are almost twice as likely to have heart failure compared with those who have not had a cancer diagnosis. Men who have had prostate cancer are 2.5 times more likely to get osteoporosis compared with those who’ve not been treated for cancer.

The report also reveals that at least 200,000 cancer survivors are estimated to be left with long-term pain after surgery, radiotherapy or chemotherapy. In particular, around one in five individuals diagnosed with breast, colorectal or prostate cancer report moderate or extreme pain or discomfort up to five years after their diagnosis.

Other cancer survivors face urinary and gastrointestinal problems that affect their quality of life. More than one in three men who were diagnosed with prostate cancer up to five years previously

reported urinary leakage. One in eight people who’d had colorectal cancer surgery had to wear a pad in case of bowel incontinence, for most or all of each day, two years after treatment.

Throwing light on the consequences of cancer and its treatment highlights the changing nature of cancer, the need for more research to better understand the extent of the problem, and recognises the need to raise awareness with both patients and professionals of the long-term effects of cancer and its treatment.

‘Put simply, the better we get at treating and curing cancer patients, the more people we will have living with the long-term effects of cancer and its treatment,’ says Professor Jane Maher, Macmillan’s Chief Medical Officer. ‘In other words, progress is a double-edged sword. Many of these problems can be managed using simple and inexpensive interventions by health professionals, while other, more complex issues require specialist services. Too many cancer survivors are suffering in silence. If people do speak up, doctors and nurses need to be confident in discussing such problems, so that consultations are helpful – otherwise, it is a poor use of precious health service resources.’

More informationThe report, along with the

lay summary Cured – but at what cost?, are available at macmillan.org.uk/consequences


News

Palliative careNHS Education for Scotland has subscribed to the online Palliative Care Formulary (PCF4+) – a core drug resource for anyone working in palliative care. The content is regularly updated and is available free of charge to those with an NHS Education for Scotland ATHENS username and password. Visit tinyurl.com/palliativecareformulary

BMA recognitionMacmillan’s booklet Your life and your choices: plan ahead has been crowned the 2013 BMA Patient Information Resource of the Year. The booklet, which helps people in England and Wales make advance care decisions, also won the award for Information that Aids Decision Making. See page 28 for news about versions for Northern Ireland and Scotland, and details of how to order copies.

£790 millionThis is the expected annual cost of caring for inpatients with breast and prostate cancer in England by 2020, according to research commissioned by Macmillan. The rise in costs may be driven by increasing numbers of people getting and surviving cancer. Macmillan is calling for every patient to receive a ‘cancer recovery package’ at the end of their treatment. You can read more at tinyurl.com/routesfromdiagnosis

The Lister Macmillan Cancer CentreBuilding work has started on a new Macmillan Cancer Centre at the Lister Hospital in Stevenage. The centre is planned to open in May 2014.

Every year, 1,500 people in east and north Hertfordshire are told they have cancer, and more than 10,000 people need treatment for cancer at the Lister Hospital.

The current cancer facilities at the hospital are stretched to capacity. Although their work is outstanding, staff at the hospital are not always able to treat everyone at the current site, so some patients have to travel to another of the East and North Hertfordshire NHS Trust’s hospitals for their treatment.

When it opens, the Lister Macmillan Cancer Centre will nearly double the hospital’s capacity for chemotherapy treatment and will remove the need for patients and staff to endure cramped conditions. It will include a dedicated information and support centre for patients and families, and two gardens for patients to relax in while undergoing treatment.

Mark Jones, Macmillan Senior Chemotherapy Charge Nurse at the Lister Hospital, describes the advantages of the new centre. ‘I can’t wait to have a modern, state-of-the-art unit. We’ll have more facilities available to the patients and a better working environment for the specialist nurses. The nurses will no longer have to worry about finding an appropriate room to speak with a patient.

‘A purpose-built cancer centre will show that the Trust and the hospital are serious about promoting oncology and haematology services.’

Gwyneth Tyler, Senior Macmillan Development Manager for East and North Hertfordshire, adds, ‘We are delighted to be working with the East

and North Hertfordshire NHS Trust to deliver the best possible cancer care in the heart of the community and ensure patients are not facing cancer alone.’

The total cost for developing the centre is £3 million. The East and North Hertfordshire NHS Trust is contributing half the costs and Macmillan has launched a fundraising appeal for £1.5 million. So far, the appeal has raised more than £150,000.*

More informationIf you’re interested in fundraising

for the Lister Macmillan Cancer Centre, call the Fundraising Support Centre on 0300 1000 200 or email [email protected] for support with your activity.

£1.5 million

£150,688

State-of-the-art unit: artist’s impressions of how the centre may look *

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Nov

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News

A new way to find volunteers in your area

Supporting carers in crisis

Tailored cancer information for Scotland


People living with cancer in Scotland can now access personalised information about their cancer type, tests and treatments.

Tailored Information for the People of Scotland (TIPS) is a new tool available through the NHS Inform website, which is Scotland’s online health information service. Visitors can pick topics they would like to learn more about, and create a tailored leaflet of information.

Macmillan funded the development of the tool in partnership with NHS24. People living with cancer, healthcare professionals and other cancer

Boots and Macmillan broaden local support

Introduced in September, Boots Macmillan Beauty Advisors are the latest development in the innovative partnership between Boots and Macmillan.

A Macmillan survey from 2012 revealed that more than three quarters of women feel the visible side effects of cancer treatment have a negative impact on their confidence, while more than two thirds don’t know how to disguise them.

Boots and Macmillan have developed bespoke training for No7 Advisors, to help them support people affected by the visible side effects of cancer treatment, in a familiar and trusted high street environment.

Macmillan has set up the Volunteering Village – an online system to help you find the right volunteers for your needs. We used your feedback to design a system that’s simple to use whenever you’re advertising Macmillan volunteering opportunities. Whatever the role, it’s quick and easy to advertise. Not only will you have access to a wide pool of potential volunteers, but it’s a chance to attract people you may not otherwise reach. Email [email protected] to request a Volunteering Village user guide.

of cancer treatment: Feel more like you: expert advice for your skin, nails and hair during cancer treatment.

More informationTo find out more, visit macmillan.

org.uk/visiblesideeffects People can find their nearest Boots Macmillan Beauty Advisor by visiting boots.com/storelocator

Feel more like you (MAC14180) is available in all Boots stores, alongside the suite of other leaflets created by Boots and Macmillan. Copies can also be ordered by calling 0808 808 00 00 or visiting be.macmillan.org.uk

Nearly half of all cancer carers suffer with mental health problems, such as stress, anxiety and depression. One in eight say their caring role causes physical health issues. If we don’t act now, these numbers will rise – and the people they care for will suffer, too.

Right now, we can influence the government to make sure that carers are identified and get the support they need. The Care Bill, which covers England, is being debated in Parliament. The Bill urgently needs to address gaps in access to information and support – which are currently affecting cancer patients and their families – by introducing new rights for carers.

To get involved in the campaign and find out more, visit macmillan.org.uk/carebill

Also, if you identify someone as a carer, please let them know about the free services Macmillan provides to help them in their vital role. This includes information booklets, financial guidance and advice on work issues. They can call us on 0808 808 00 00 or visit macmillan.org.uk/carers

Across the UK, more than one million people are looking after someone with cancer.

The support they provide is vital: from helping with shopping, dressing, or taking someone with cancer to appointments, to being there when they need to talk. Many of those who provide this support are classed as unpaid carers, but half of them don’t even think of themselves as carers or realise there is support available to them. Without support, these carers are facing a crisis. No one should have to cope on their own when looking after someone with cancer.

’ What we really need is just a bit of recognition’

Joe, husband and carer

For information about any of the cancer awareness months listed, visit be.macmillan.org.uk/cancerawareness

DecemberChildhood Cancer Awareness Month

JanuaryCancer Talk Week20–24 Januarymacmillan.org.uk/cancertalkweek

FebruaryWorld Cancer Day4 February International Childhood Cancer Day15 February

MarchOvarian Cancer Awareness Month Prostate Cancer Awareness Month

April Bowel Cancer Awareness Month Virgin London Marathon13 Aprilmacmillan.org.uk/running

charities were also involved in its creation.

TIPS has been described as Scotland’s equivalent of the Information Prescription Service, which is available in England through the NHS Choices website.

Programme managers will be working with healthcare professionals to implement TIPS across health and social care settings in Scotland over the next three years.

More informationTIPS can be accessed online

at nhsinform.co.uk/cancer/tips

When Joe began looking after his wife Melita, he didn’t realise there was support available. ‘It never occurred to me that I was a carer. It was just a natural progression from a husband and wife relationship – if someone needs help, you help them.’

Boots Macmillan Beauty Advisors can offer practical advice and information on a range of issues, from defining sparse eyebrows and eyelashes to minimising dark circles. They can also signpost people to other local Macmillan support.

Giving confidence backSam Brady, a Boots Macmillan Beauty Advisor based in Marldon, says: ‘For me, it’s about helping people get their confidence back by offering them simple tips. Seeing them feel more confident at the end of a session is such a positive experience.’

We’ve also developed a new leaflet focusing on the visible effects

The awards celebrate the outstanding contribution all Macmillan professionals make to cancer services and the lives of people affected by cancer. The winners, chosen by a panel of specialists, are setting an example of excellence.

This year, two or three equal winners were recognised in each of the four categories:• The Service Improvement

Excellence Award celebrates professionals whose vision and commitment to a service has made a big difference to people affected by cancer.

• Innovation Excellence Award winners have shown how important innovative thinking is to improving cancer care.

• Partnership Excellence Award winners have been exceptional in bringing groups together to provide great services for people affected by cancer.

• The Team Excellence Award honours teams who are not only high performing and innovative, but the teamwork they’ve displayed has also led to outstanding levels of support for people affected by cancer.

The winners received their awards during a ceremony hosted by British Olympic rower Greg Searle.

To read more about the winners and to view video interviews with each of them, visit macmillan.org.uk/professionalsawards

The winnersService Improvement Excellence AwardSarah Burton, Macmillan Gynae-oncology Nurse Specialist, Velindre Cancer CentreSarah has led an innovative project to modernise care for people with gynaecological cancer. This has resulted in the introduction of a nurse-led ovarian cancer follow-up clinic – the first of its kind in the UK. She’s also started a new follow-up telephone service and has introduced a psychosexual clinic for people with cancer. Thanks to the project, waiting times for follow-up appointments have reduced from up to four hours to just 15 minutes. For more information, email Ginny Brink [email protected]

Kathryn Elias, Macmillan Oncology Physiotherapist, Abertawe Bro Morgannwg University Health BoardKathryn has developed a first-class physiotherapy service, improving cancer care in many ways. She has introduced an innovative ‘Wiihab’ scheme, which uses the Nintendo Wii to help patients improve strength, balance and movement. She’s a key member of a team that set up the Cancer Rehabilitation scheme, which links into Macmillan’s Physical Activity pilot and the National Exercise Referral Scheme. She has also introduced changes to create a high standard Metastatic Spinal Cord Compression service, which has resulted in a substantial reduction in inpatient stays.For more information, email Kim Morris [email protected]

Our annual awards are a chance to thank the teams and individuals who are championing high standards in the care of people affected by cancer

Ruth Thompson, Macmillan Haematology Clinical Nurse Specialist, Belfast Health and Social Care TrustBy setting up a nurse-led clinic and a telephone review clinic, Ruth has significantly improved patient experience and reduced waiting times for haematology patients. These clinics provide advice about lifestyle and coping with chronic illness, helping people to feel more confident about managing their own condition. Ruth has also introduced a holistic needs assessment process to help people address their social, emotional and financial concerns. For more information, email Barry McVeigh [email protected]

Innovation Excellence Award Morven Maclean, Macmillan Volunteering Manager, Glasgow LifeIn just one year, Morven has helped recruit more than 140 volunteers in Glasgow, aged between 16 and 75. Her good work has all been part of a groundbreaking partnership between Macmillan and Glasgow libraries, which provides volunteer-led information and support centres in the community. Without her strategic vision and innovative thinking, it wouldn’t have been possible to reach so many individuals in a short space of time. More than 2,500 people have used the service. For more information, email Tricia Daniel [email protected]

Anna-Marie Stevens, Macmillan Nurse Consultant Palliative Care, Royal Marsden NHS Foundation TrustUsing research from a successful project in Australia, Anna-Marie has established the new Hospital2Home service, which is improving palliative care in the community. Thanks to her hard work, more people can spend their final moments at home, in keeping with their and their family’s wishes. The service is also helping to avoid unnecessary readmissions and more people are saying they feel informed and supported when their oncology treatment ends. For more information, email David Seychell [email protected]

Partnership Excellence AwardBarbara Machin, Macmillan Specialist Dietitian, York Health Services NHS TrustBarbara has been a fantastic ambassador for allied health professionals, working closely with several partners to draw attention to the many ways they can help. For example, she attends the local cancer board as the allied health professional representative. By working in this way, she has influenced services nationally, regionally and locally and also reviewed publications for the National Cancer Action Team. Thanks to her holistic view of care, she’s made a real difference to the support people with cancer are now receiving during

and after treatment. For more information, email Lorraine McDonald [email protected]

Ben Heyworth, Macmillan Project Manager, Christie Hospital NHS Foundation TrustBen has been key to the development of a new role that supports people experiencing side effects after treatment for pelvic cancers. He has worked very closely in partnership with service users to develop a service pilot model. He has always put the patient voice at the heart of decision making and has helped to set up a reference group for people affected by cancer that has influenced other services, including health and well-being clinics.For more information, email Julie Atkin-Ward [email protected]

Sandra Campbell, Macmillan Nurse Consultant for Cancer and Palliative Care, NHS Forth ValleySandra has led the development of a number of strategic partnerships, most importantly, those with three local authorities. This has resulted in many achievements, including the continued growth of the Macmillan benefits service in Forth Valley, which has shown excellent results, despite increasing demand. For more information, email Trisha Daniel [email protected]

Team Excellence Award Abertawe Bro Morgannwg University Health Board Lymphoedema Service Since this service was established in 2001, it has grown rapidly and it now helps more than 2,000 patients. Patients are supported by a team of nine specialists, including two assistant lymphoedema practitioners, three lymphoedema assistants and two administrators. Together, the team is providing a high standard of lymphoedema care and they’ve developed lymphoedema prevention and cancer rehabilitation schemes for breast, gynaecology, skin and head and neck cancers. For more information, email Kim Morris [email protected]

Lynda Jackson Macmillan Centre TeamFor 20 years, this centre has been leading the way in supporting people affected by cancer. It now responds to more than 30,000 interactions a year. The team of more than 80 people provides a wide range of services to help with all of a person’s needs, whether they’re medical, emotional, financial or practical. See page 25 for an article by Sarah James from the Lynda Jackson Macmillan Centre.For more information, email Gwyneth Tyler [email protected]

News

8 Mac Voice Winter 2013 www.macmillan.org.uk/macvoice 9

Congratulations to all of the winners

News

The award winners pictured with host Greg Searle


The Broadening Horizons Project, based at LOROS hospice in Leicester, has made great strides in its three years of operation.

The project’s aim was to raise awareness among Black, Asian and Minority Ethnic (BAME) communities[1] of the care and services available at end of life or for people with incurable disease.

Initial community involvement showed that the majority of the BAME population in the area were unaware of the palliative services available. Local data demonstrated that these populations were disproportionately under-represented as users of these services. This reflected national findings.

Within some communities, there are taboos around end of life issues and the people who work with and

As a Macmillan professional, you may be supporting many people affected by cancer, including carers, with both health and social care needs.

The changing and varying needs of people throughout their cancer experience are often related to social care, and can encompass personal, practical and emotional needs.

We know that you strive to ensure that people affected by cancer are fully supported, so you may be using, and referring people to, Macmillan services that help support social care needs.

Macmillan’s Social Care Programme has been developed to help you with this and to ensure that the social care needs of people affected by cancer are recognised by everyone – not only Macmillan professionals.

The programme’s objectives are to:

1 Create a cultural shift within Macmillan to ensure the social care needs of people affected

by cancer are recognised alongside their health needs.

We also plan to develop and use a language to talk about social care that is understood by all partners. This includes multidisciplinary

Success so far for Broadening Horizonscare for the dying. Talking about death, decision making and treatment of symptoms, as well as the feelings within the wider community when someone has a terminal illness, can all be major issues for some individuals and families.

Broadening Horizons has trained volunteers recruited from BAME communities to speak with knowledge and confidence to members of the many diverse groups in the area. The volunteers attend local health events in the community, and visit health centres and places of worship. They engage with members of the public, giving information and debunking myths around end of life care. They also signpost people with particular queries to appropriate organisations.

With the knowledge they gain

health and social care teams, local authorities, local government and health and social care trusts, and people affected by cancer. This language will not only help people make sense of a system that can often be complex and difficult to understand, but will also make it easier for those working in different disciplines to support joined-up, coordinated care.

2 Develop key relationships with local authorities, government agencies and

health and social care trusts, and to act as a broker/facilitator between those who commission healthcare and providers of care services.

We want to ensure services are integrated throughout the cancer journey and make sure that people experience a successful return to the community from acute settings.

3 Engage with Macmillan professionals, alongside the wider workforce.

We want to ensure you have everything you need to support, advise, assess and advocate for people along their cancer pathway. This will include

Reacting to the plans for its replacement, Professor Jane Maher, Macmillan’s Chief Medical Officer, said: ‘The LCP works very well much of the time. However, poor implementation can result in the upsetting findings highlighted in this report.

‘Macmillan welcomes the move to individual care planning, but it’s vital that staff are supported and trained to have the right culture and skills in place, and to talk to patients and their families early on.’

The LCP was developed in the late 1990s at Royal Liverpool University Hospital, in conjunction with the Marie Curie Palliative Care Institute. It was designed to offer the best possible care to people at the end of life.

Macmillan has responded to the decision by the Department of Health in England to phase out the Liverpool Care Pathway (LCP), a plan of care for patients in the final days and hours of life.

The use of the LCP in England will gradually be replaced by individual end of life care plans. This change was outlined in the July 2013 report, More care, less pathway: a review of the Liverpool Care Pathway, which was published after an independent review of the LCP.

Back in September 2012, 22 charities and public bodies, including Macmillan, published a consensus statement on the LCP, giving support to its appropriate use.

from these volunteers, people facing life-limiting illness can make informed choices about where and how they are cared for. This is a priority highlighted in England’s End of Life Care Strategy.[2]

Working in partnership with Macmillan has led to additional benefits. People not only learn about local services and choices, but also about how Macmillan is a supportive organisation freely available to them, with resources in a range of languages.

1 The project uses the term BAME instead of BME. BAME is more inclusive and means all ethnic groups except white British.

2 Department of Health. End of Life Care Strategy. 2008.

More informationContact Anjana Vaja on

0116 231 8452 or visit loros.co.uk

resources and training, such as a social care e-learning package that will help to raise awareness of the social care needs of people affected by cancer. We will also provide input into service design. There is a possibility that, where appropriate, new posts may be introduced.

4 Campaign to raise awareness of people’s care requirements, including social care needs.

This includes championing the right to a holistic needs assessment for the person with a cancer diagnosis, but also for their carer or those important to them.

At Macmillan we want to make sure that all people affected by cancer, including carers, are fully supported with both health and social care needs at all stages from diagnosis. We recognise how important Macmillan professionals are in making this happen. Therefore, we welcome any feedback, comments and suggestions about how this can be achieved.

Further informationFor more information,

contact Fiona on 020 7091 2380 or [email protected]

Reviewing the Liverpool Care Pathway

More than just health needs

But in 2012, concerns emerged about the LCP. Media reports revealed complaints about its use. There were also concerns raised about hospitals receiving payments for increasing the number of patients placed on the LCP.

Although this review of the LCP has taken place in England, it has triggered a review process in Northern Ireland and Scotland. Wales has its own framework for end-of-life care.

More informationContact Adrienne Betteley,

Programme Manager – Palliative and End of Life Care, on 07793579373 or [email protected] can read the review report at tinyurl.com/lcpreport

Fiona Smith, Macmillan’s Social Care Project Officer, describes Macmillan’s plans to encourage a greater focus on the social care needs of people affected by cancer

News


it would take its toll. Some days can be more draining than others, so it’s important to learn ways of coping.

I always try to leave work at work. We don’t make notes while we are counselling as it can stop us from listening properly, so I have to remember what is said and write up records after each session. Obviously, that’s a lot of information to hold, so I always make sure I write up my notes before I go home, even if that means staying later.

What feedback do you get?We’ve recently carried out a survey on our service and received a lot of positive feedback. Comments included: ‘I know I would not be where I am today, continuing to live without the anxiety and other emotions cancer brings, without the support that Macmillan counselling has provided.’

We often get letters from clients thanking us for our support. When I’m working on Info Space, people will come up to say thank you – even if it was a Macmillan nurse and not me who was involved in their care. That makes me realise I’m part of a bigger team.

What are the rewards of your job?In my role I feel privileged, as I support people at one of the most challenging times in their lives.

Often, clients will come here having never had counselling before. They have no idea what it involves and can’t see how talking can make a difference. I can’t necessarily change their situation, but I can give them strategies to help them cope and give them a confidential space where they can be honest about their emotions.

Sometimes people come in very distressed and leave feeling like a weight has been lifted.

I’m very lucky I get to do something that I love. Not everyone can say that.

other activities alongside counselling. My post was put into place due to a recognised local need for this type of role, with strong support from Basildon Hospital and the local user group. The hospital is testing and evaluating the service provided by this post with a view to securing it as an ongoing role.

What does your role involve?During counselling sessions, I provide emotional or psychological support to people who need it. But I also work on our Macmillan Info Space, an information and support pod, for two sessions a week. This can involve signposting people to information and services, or just providing a listening ear. I’m a trust representative on our cancer user group and am also involved in the hospital’s survivorship committee.

Roger and I educate staff about our service, and we teach on the ‘Moving Forward’ group, which is run by the breast cancer nurses. This is a series of sessions for people who have finished their cancer treatment, covering all aspects of life after cancer.

We also offer counselling support to all staff, and communications training, where we share skills they can use if they’re dealing with someone who is distressed.

How did you start working at the hospital?Back in 2010, I was completing my diploma in counselling at Anglia Ruskin University. To qualify as a counsellor, it’s necessary to complete 100 hours of client work, and while I was on student placement at Mind in Chelmsford, I also started volunteering at the hospital. When I completed my placement I stayed on at both places, because within the counselling world, volunteering is the best way to find out about job openings.

The hospital had made a bid for funding from Macmillan, originally for a counselling position to complement the existing Macmillan Counsellor, Roger Crellin. That fell through, but what came out in the end was my new role, which is more holistic – it involves

Name

Sarah BunceMacmillan Psychosocial Support Worker

In postSince November 2011

LocationBasildon Hospital, Basildon and Thurrock Hospitals NHS Foundation Trust

[email protected] 01268 524900 ext 4740 or 1268

microbiology degree – and enjoy listening to other people. This role combines the best of both. Obviously I deal with the emotional side of cancer, but I love trying to understand the medical side.

Being based in a hospital, we never know who is going to walk in. Most of our clients are outpatients, but we also see people in different settings. We may visit a ward and counsel someone at the bedside, which is outside of our usual way of working. It can be quite challenging, but I’ve found ways to overcome this. I also have to be quite creative with diary planning. We aim to see people within two weeks, but we try to see inpatients within 48 hours.

How does counselling help people affected by cancer?Counselling gives people a space where they can be honest about how they feel. Our natural instinct is to want to protect our friends and family, and to pretend we are coping, when we are not. This is a chance for someone to talk in confidence, and to learn tools to help them cope in challenging times.

How do you cope with the challenges of your role?In this job I hear many emotional stories, and if I didn’t look after myself,

‘ We may visit a ward and counsel someone at the bedside, which is outside of our usual way of working’

‘ Counselling gives people a space where they can be honest about how they feel. Our natural instinct is to want to protect our friends and family, and to pretend we are coping.’


How were you suitable for the role?I’ve always had an interest in all things medical – I have a

I work in a multidisciplinary team that includes Roger, six specialist nurses, a consultant, a specialty registrar and a team secretary. I am lucky to be in a very supportive team and we complement each other well.

What qualities are most useful in your role?Counsellors need to be good at empathic listening, where we’re really able to put ourselves in our clients’ shoes. Roger and I also have to be flexible and to think on our feet.


Information prepares people affected by cancer for treatment, helps them cope with their illness and promotes

recovery.[1] Most people with cancer want to know more, but many do not receive the right information at the right time or in the right way. There is a need, not only for information provision, but for a supportive and personalised explanation of it.[2]

Health literacy is defined as: ‘The degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions.’[3] Research suggests that those with poorer health literacy suffer from higher morbidity.[4] They are also less likely to seek medical advice with early symptoms, or be prepared with questions for health professionals.[5]

Patients and families often seek information from professionals with whom they’re familiar, perhaps in relation to other health conditions. This indicates a need for nurses from all backgrounds to have the knowledge and skills to offer relevant, specific, accurate and timely information to those they care for, and to be able to interpret this information if needed.

Macmillan Support Line staff wanted to help nurses to assess and meet patients’ information needs about cancer, particularly during survivorship. So they designed and delivered a two-day training course to 11 nurses from a range of areas within NHS Grampian.

As well as explaining the importance of health and information literacy, the course taught participants to assess the information needs of someone with cancer and deliver information more effectively.

Information giving Legal help at end of lifeIn the first of our communication skills series, John Sweeney discusses Information giving in cancer care: a course run by Macmillan Cancer Support and NHS Grampian

After a successful pilot, a scheme providing legal support for terminally ill people may soon be available nationally

Some participants visited the Macmillan Support Line in Glasgow to see some of the taught skills in action. All planned to share the information with colleagues and some planned to create an information resource for their own practice area based on some of the principles discussed.

Many considered adopting some of the materials aimed at fostering shared decison making.[6] Others felt the course would help them support the information needs of junior colleagues. Telephone skills was another area of training that was found useful. This is something that is often missing from communication skills courses but is an everyday task for nurses.

‘There was a lot to think about: how and when do I give information? How much is enough? How do I check someone understands? [The course] covered everything from body language to giving information by phone as well as where to find accurate and relevant information.’ – course participant

The handouts and training approach were rated as excellent or good by all participants. All reported an improvement in their information giving skills and said they’d use some of the techniques to check understanding with patients and carers.

Although there are no current plans to deliver the course again, the course material has since been integrated into the training for staff joining Macmillan’s Support Line. Discussion has also taken place with Macmillan’s Professional Engagement team about its possible use with a wider audience, but there are no plans for this at present.

Improving communication skills Legal support service Feature

‘ Patients have been seen within 20 minutes of referral to provide a deathbed will’


L egaCare is a national charity offering specialist legal support to clients with life-threatening and life-limiting

illnesses. It’s the only charity of its kind in the UK and our aim is to give peace of mind, dignity and control to clients and their families at a critical time in their lives.

I was inspired to set up the charity by my amazing dad, Brian, who was suffering from myelodysplasia. It was through supporting him on hospital visits that I came into contact with other people having treatment. I often wondered what they worried about during the hours they were there. After talking with dad’s consultant and other doctors, I discovered that many of their patients’ concerns centred on legal issues.

Using my experience as a qualified solicitor, I launched LegaCare in January 2011, thinking it may help one or two people. In July 2011 we partnered with Macmillan, who had identified the gap in support for people with cancer who couldn’t access legal help because of financial or social circumstances. I approached the UK’s former Cancer Czar, Professor Sir Mike Richards, for guidance on setting up the service. After recognising how great the need for it was, he advised me to focus on helping people at the palliative stage and to begin with a local service. He still provides guidance today.

Since 2011, with support from Macmillan, we’ve helped more than 400 patients. Most are terminally ill and many are too ill or frightened to start thinking about things such as guardianship of their children, their jobs or home, wills or advance care planning. The service is free to people affected by cancer and other life limiting illnesses, thanks to funding that comes from Macmillan, Legal and General, myself, and client donations.

I’m very proud of my small (but growing) team, who deliver our services sensitively, professionally and quickly. We see immediate impact when a client’s worry is reduced. They can spend their recovery or remaining time knowing their issues have been dealt with.

The service is accessed through referral by health professionals. Macmillan professionals refer 85% of our cases, and approximately 90% of the people we see have cancer. At first, we were seeing one or two patients a week, but we now see up to 35–40. When a professional calls LegaCare, they are referred immediately to a solicitor who takes brief details of the client and their concerns. An appointment will be made at a place convenient to the client – usually in the hospital, home or hospice. This is normally within one or two days, but patients have been seen within 20 minutes of referral to provide a deathbed will.

With help from Dr Claud Regnard, Consultant in Palliative Care, we’ve developed a master class to help Macmillan professionals better understand our service. Many said they’d often tried to help patients with complex legal issues themselves.

After positive feedback from professionals and people affected by cancer, I’m determined to expand our service and master classes beyond the north east, and to people at an earlier stage of cancer. I’m exploring whether we could offer legal surgeries in hospitals, hospices or GP practices, and whether we could provide a helpline, or legal support to the Macmillan Support Line.

Tragically, my dad died in September. I now feel I better understand how vulnerable people can feel towards the end of life, and how desperately our service is needed. I look forward to developing it with Macmillan.

Further information

John Sweeney

Macmillan Information Nurse Specialist


0141 223 7680

jsweeney @macmillan.org.uk

References1 van der Meulen N et al.

Interventions to improve recall of medical information in cancer patients: a systematic review of the literature. Psychooncology. 2008; 17(9):857-68.

2 CancerBACUP. The cancer information maze: report investigating information access for people with cancer. 2005.

3 Institute of Medicine. Health literacy: a prescription to end confusion. Washington DC: National Academies Press. 2004.

4 Edwards M et al. The development of health literacy in patients with a long-term health condition: the health literacy pathway model. BMC Public Health. 2012; 12:130.

5 Manning DL and Dickens C. Health Literacy: more choice, but do cancer patients have the skills to decide? European Journal of Cancer Care. 2006; 15(5):448–452.

6 Stacey et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database of Systematic Reviews. 2011; 10.

Further information

Meg Kirby

Founder and Chief Executive

LegaCare

01661 867016

[email protected]


Feature Work and cancer

Further information

Maartje de Laat

Working through cancer Project Manager


020 7091 2132

[email protected]

Let’s talk about workMacmillan’s Work support route guide supports professionals to help people affected by cancer make informed choices about employment

Emma Cross, Macmillan Senior Benefits Advisor at Southwark Citizens Advice Bureau, introduced the Work support route guide into her work

Every year, more than 100,000 people of working age are diagnosed with cancer. As the number of people living with and

beyond cancer rises, more people will face difficult decisions about work. These people need all the support they can get, not just from their employers, but also from health and social care professionals.

Why is work important? In a recent survey, 82% of people with cancer told us that work is important to them.[1] Many people emphasise the importance of work in regaining a sense of normality and control over their lives after, and sometimes during, treatment.[2][3]

For people affected by cancer, remaining in or returning to work can help promote recovery and rehabilitation, and lead to better health outcomes.[4][5] And for many, work is a financial necessity.

Yet we know that people with cancer are 37% more likely to be unemployed than the general population.[6] Of course, not everyone diagnosed with cancer will be able to work but, with the right support, many issues can be successfully managed. Having conversations early on in someone’s cancer experience can be vital in preventing problems at a later stage.[7]

Who provides support?We know that talking about work with people affected by cancer is not the responsibility of any one type of professional. Fortunately, many health and social care professionals, including specialist nurses, benefits advisers and information and support professionals, see it as part of their role to talk about work.


‘Starting to use the Work support route guide was actually very easy. At first, I needed to give myself a few minutes to familiarise myself with and to understand the guide. If I have confidence in the tool, the client will also have confidence in the information I am giving them.

‘The Work support route guide fits really well with the holistic approach of our service. It empowers people affected by cancer to make decisions around what they want to do about work. There are many individual choices they have to make. Making these decisions isn’t something that I, as an adviser, can do for people. But I have been able to talk with more confidence about where they can go for support around work.

‘When we ask people about work, we are opening a door to a world that is potentially beyond our

specialism. The Work support route guide helps me to make sure the client is getting everything that they need. It also stops me from feeling that I am just asking questions and then offering no answers.

people who decided to continue working during their treatment and they were financially better off for it. There was someone else who recognised that, while financially they might be better off, emotionally they did not feel they could cope with the pressure of work, so they decided not to.

These are personal decisions that people have to make. I have seen people become more confident because they are better able to have conversations with a line manager, for example, and to make those difficult decisions.

Sometimes, people can feel they are not in control of their lives when they are diagnosed with cancer and going through treatment. This tool helps professionals to give them some of that control back.’

‘ I have been able to talk with more confidence about where to go for support around work.’

Many don’t, however, consider themselves to be experts on work and often don’t know where to signpost people. But they do recognise that discussions about work are part of supporting a person’s holistic needs.

Work support route guideTo support health and social care professionals to have conversations about work, Macmillan has developed the Work support route guide. Recently updated and now endorsed by the College of Occupational Therapists, this resource allows you to have a conversation regardless of whether the person with cancer is in employment, out of work or self-employed. The guide is available as either a booklet or downloadable PDF, with versions for each UK nation. To access the Work support route guide please go to macmillan.org.uk/workandprofessionals

‘If we don’t address work in our conversations, it will become a greater area of anxiety for people. Addressing it directly saves time and offers a better service and experience for the client. Usually, it can resolve problems or stop them from happening in the first place.

‘The outcome is different for everybody. I’ve worked with two

References1 Macmillan Cancer Support/YouGov online survey of

2,217 people living with cancer in the UK. Fieldwork conducted 5-17 June 2013. Survey results unweighted.

2 Rasmussen DM, Elverdam B. The meaning of work and working life after cancer: an interview study. Psycho-Oncology. 2008; 17:1232-1238.

3 Kennedy F et al. Returning to work following cancer: a qualitative exploratory study into the experience of returning to work following cancer. European Journal of Cancer Care. 2007; 16(1):17-25.

4 Waddell G, Burton AK. Is work good for your health and wellbeing? London: The Stationery Office. 2006.

5 Black C. Working for a healthier tomorrow: work and health in Britain. London: The Stationery Office. 2008.

6 de Boer AG et al. Cancer survivors and unemploy-ment: a meta-analysis and meta-regression. JAMA. 2009. 301: 753-762.

7 Eva G et al. Thinking positively about work. Delivering work support and vocational rehabilitation for people with cancer. London: UCL Institute of Neurology. 2012.


M y nursing career started in Belfast in the 1970s, followed by posts in midwifery, cardiology,

and district nursing in England. It has culminated in a challenging but enjoyable role as a CNS in palliative care.

I was appointed as a Community Macmillan Nurse in the Midlands in 1992, which coincided with the introduction of Disability Living Allowance (DLA). Little did I know, as I retire 21 years later, DLA would also be ‘retired’ as part of welfare reforms.

I was in a lone post in a large team covering a huge geographical area. My nearest colleague was 10 miles away, so it could be quite lonely at times.

I'll never forget when one of my sons, who was seven at the time, told his teacher that his dad was a farmer (he is a pharmacist) and that I was a McDonalds nurse!

In early 1994, we relocated to the north west of England. I took on a similar role, but employed by a hospice in a combined team (hospice and the primary care trust).

Before the 1990s, the outlook for patients may not have been as good as it can be now, so survivorship was not on the agenda. My main focus at that time was psychological care, symptom control, end of life care, bereavement support and teaching.

So what has changed? Since The NHS Cancer Plan[1] of 2000, the reorganisation of services means patients are diagnosed more quickly. From when I started working in cancer and palliative care, treatments have improved. Patients have multiple courses of treatment and the chance of surviving cancer is greater. Symptom control has improved and palliative care education is more accessible.

Survivorship, advance care planning and the prescription of medication for use at end of life are but a few of the advances in palliative care. My caseload has expanded, with many patients requiring different levels of intervention over much longer periods of time.

The NHS Cancer Plan includes a strategy that aims to ensure all professionals in cancer and palliative care are trained in effective communication skills. This remains a huge challenge.

Four million people will be living with and beyond cancer by 2030.[2] Workforce planning will be crucial if we are to meet the needs of patients in the future. Macmillan has recognised this in its work on the National Cancer Survivorship Initiative and its one-to-one support project (see macmillan.org.uk/onetoone).

I’ve learned over time that patients really are the experts – they have a lot to teach us. Early on in my career, I was clumsily trying to establish a patient’s knowledge of her cancer. She used every word known to mankind to describe it, without actually saying the word cancer. Being the eager novice, I tried every technique I had learnt on a communications skills course to explore what she understood. I finally gave up, and as I was leaving, she pointed to another house on the road and said, “See that lady who lives there – she has cancer too.” I left feeling rather foolish, but equally so, a little bit wiser.

Supervision, support from colleagues, feedback from patients and my family have sustained me during rewarding, frustrating and sad times. If you’re just embarking on your career in cancer and palliative care, be it in nursing, therapies, medicine or social care – hold on tight – you are in for a bumpy but exciting ride!

Post-treatment supportAn education programme for people who have completed breast cancer treatment is continuing after a successful pilot

Further information

Ruth O’Connor (pictured left)

Macmillan Breast Clinical Nurse Specialist

Frimley Park Hospital

01276 604945

ruth.oconnor@ fph-tr.nhs.uk

Feature After treatment Professional experience Feature

In 2009, the breast unit at Frimley Park Hospital committed to Breakthrough Breast Cancer’s Service Pledge, which emphasises

the need for further support on completion of breast cancer treatment. After looking into education programmes already available for people after cancer, we could see there was nothing nearby for those who’d had breast cancer. These people often have specific queries about their health post-treatment.

We responded by designing a Moving on programme, with support from other professionals at our hospital. In autumn 2011 we began three pilot programmes, one each in the morning, afternoon and evening, to cater to people who were working or had childcare commitments. We found a church hall venue and hoped that holding the sessions away from the hospital, and where there was easy and free parking, would increase attendance.

We invited people who had completed treatment for primary breast cancer, excluding Herceptin. We asked them to commit to attend all six sessions. For the three pilot courses, 100 invitations were sent out, 52 people responded and 40 attended. Only one person dropped out.

The course was run by the breast care team: Metastatic Breast CNS Jane Watts, Macmillan Breast CNSs Ruth O’Connor and Pauline Boardman, and the hospital’s Clinical Psychologist, Liz Chorlton. One or two nurses were at each session, and they answered any questions at the end. We recruited speakers from the hospital and our local cancer centre at no cost.

At the beginning of each programme, we asked participants what their hopes and expectations were, and used these to shape the content. We focused on different topics each week, including exercise, emotional

well-being, surgery and diet. We covered any outstanding topics in the last session.

To monitor the course’s effectiveness, we asked participants to complete two questionnaires before and after: the Quality of Life Scale (QoLS) and the General Health Questionnaire (GHQ). The GHQ scores showed significant improvement and the QoLS scores remained stable. We’d expect the QoLS scores to improve over time, as people implement what they learned. Our clinical psychologist analysed the questionnaires and where there were any concerns, a breast CNS made follow-up calls.

When we evaluated each course, all attendees said they’d recommend it to a friend. One wrote: ‘I was sceptical about this course as I am not into ‘groups’, but I came with an open mind and I am so glad … The topics were very relevant and so very useful.’

After receiving positive feedback from the pilot, we continued with the programme. We’re now running the course three times a year, alternating between day and evening sessions. The course maintains a core of topics and speakers, but is adapted to suit the attendees each time. Each course is evaluated to ensure content is up to date. We are coming to the end of our sixth group and have three more booked for 2014. So far, 84 people have completed the programme, and the most recent course had a waiting list.

From the programme, a choir for breast cancer patients has started and a secondary breast care support group is forming. The programme benefits patients, but it also educates healthcare professionals. We too easily assume that once people complete treatment they’re on the road to recovery. But it can take a long time to recover enough to return to work and family life.

Looking backAs she prepares for retirement, Jackie Pooler reflects on 21 years as a Clinical Nurse Specialist, and the changes she has seen in cancer and palliative care in that time

Further information

Jackie Pooler

Contact via [email protected]

‘ We too easily assume that once people complete treatment they are on the road to recovery’

‘ Workforce planning will be crucial if we are to meet the needs of patients in the future’

References1 Department of Health. The NHS Cancer plan: a plan for investment, a plan for reform. 2000.

2 Maddams J, Utley M, Møller H. Projections of cancer prevalence in the United Kingdom, 2010-2040. British Journal of Cancer. 2012; 107: 1195-1202.

Further information Macmillan’s support for people after cancer treatment includes:

• Health and well-being clinics: macmillan.org.uk/healthandwell beingclinics

• HOPE course (Helping to Overcome Problems Effectively): learnzone.org.uk


counsellors, meet support groups and attend talks. They can learn about the choices that are available to them and effectively commission their own ongoing healthcare.

‘We were looking to put ourselves in the position of a patient,’ says Dr Barwell. ‘After treatment, they may think: “I need to speak to a researcher, a psychotherapist, or a dietitian.” The medical supermarket model gives people the chance to take control and pick out the information and support they may not otherwise have been offered.’

An evaluation of the last three events was carried out in February 2013. Out of the 65 attendees who participated in a survey, all found the overall events informative, with more than 80% finding them very informative. 81% said they intended to make changes to their lifestyle following the events.

YouTube channel Since 2011, the project has been posting videos through a clinical cancer genetics channel on YouTube (youtube.com/user/clinicalgenetics). The videos give information for people worried about their genetic risk of cancer, including information about specific inherited conditions.

By December 2012, the clinical genetics YouTube channel had 8,310 views across 125 different countries.

T he University of Leicester has a strong background in genetics research, perhaps most notably

because it is the place where Professor Sir Alec Jeffreys discovered the technique of DNA fingerprinting in 1984. The university is now home to a genetics centre called GENIE (Genetics Education Networking for Innovation and Excellence), led by Professor Annette Cashmore. It is one of the leading national centres for genetics education.

Dr Julian Barwell is a senior lecturer at the university, where he carries out research into the causes and management of inherited cancers. He is also a consultant in clinical genetics at the Leicester Royal Infirmary.

Dr Barwell works within the Leicestershire Clinical Genetics Service, which sees people who have been referred to the service either because a number of their relatives have

Feature Primary care Genetics Feature

Supporting families with cancerDr Julian Barwell speaks with us about medical supermarkets, the first clinical genetics YouTube channel, and other elements of the Supporting Families with Cancer project

Further information

Dr Julian Barwell

Senior Lecturer University of Leicester and Consultant Cancer Geneticist University Hospitals of Leicester

0116 258 6042

julian.barwell@ uhl-tr.nhs.uk

been diagnosed with cancer, or because it is suspected that their cancer may have been caused by an inherited gene. Their family history is traced and they may be offered a blood test to determine whether such a gene is present.

In November 2011, funding from Macmillan allowed the University of Leicester and University Hospitals of Leicester to build on this genetics service and start the Supporting Families with Cancer project. The aim of the project is to support families with a strong history of cancer. Its launch followed concerns that many opportunities to offer genetic testing were being missed – either because people with cancer and their families lacked awareness about inherited risks, or because they found it difficult to arrange referrals to geneticists. The project also aims to address more general concerns

‘ The medical supermarket model gives people the chance to take control and pick out the information and support they may not otherwise have been offered’

that as a whole, people with cancer and their families do not get enough support after cancer treatment.

The project encompasses a number of services and resources in Leicester, including:• ‘medical supermarkets’ – events

where anyone with cancer and their family members can meet a variety of specialists and support groups after cancer treatment has ended

• community and hospital projects to raise awareness of inherited cancers. These target families that meet at least two of the project’s ‘three, two, one’ criteria – where there are three relatives with cancer, across two generations, with at least one who was diagnosed under the age of fifty

• a psychotherapeutic and medical psychology service for people with cancer who are deeply concerned about the impact of the condition on their family

• a YouTube channel that aims to increase awareness of, and offer information about, the links between genetics and cancer.

Dr Barwell says the different facets of the project are brought together by a focus on increasing ‘awareness of and access to’ holistic care for families following cancer treatment.

‘We are proud of our associations with both genetic and lifestyle- related stakeholder groups,’ says Dr Barwell. ‘Nowhere else in the country is currently offering this integrated package.’

Medical supermarketsOnce their cancer treatment is completed, people with cancer in Leicester and their relatives are given the opportunity to attend an evening or weekend event where they can speak with specialists, such as clinicians and

Out of the 65 medical supermarket attendees who completed a survey

81% said they intended to make changes to their lifestyle following the events.

These views were mostly from people in English speaking, westernised countries where cancer is a major health burden (such as the US, the UK and Australia).

Dr Barwell says the videos, ‘Act as a memory aid for patients who have been seen in a regional clinical genetics department, and a resource they can share with their family members’. Ongoing workThe project continues to reach out to communities using a wide variety of platforms. This includes through a local drama group and black and minority ethnic (BME) outreach work, such as messages on an African-Caribbean radio station and a BBC Radio Leicester Asian Network programme.

Dr Barwell has received a University Hospitals of Leicester Caring at its Best Award recommendation for ‘concentrating on what matters most’ through his work on the project.

Looking forward, Dr Barwell says, ‘We plan to continue reaching out into the community. Eventually, we would like to apply the medical supermarket model nationally.’

20 years of specialist supportCelebrating two decades of Macmillan cancer information and support services

2 013 marks the 20th year of Macmillan cancer information and support services, which started with the

opening of the Lynda Jackson Macmillan Centre at Mount Vernon Hospital in 1993. The provision of information to people affected by cancer remains a core component of our service offer and, last year alone, our static information and support centres responded to more than 350,000 enquiries.

These centres are central to Macmillan's information and support provision, which also includes the Macmillan Support Line, mobile information and support centres and information resources.

Recent research by the Patient Information Forum, which was part-funded by Macmillan, confirmed the value of high quality, personalised health information in demonstrating a positive impact on patients’ experience of healthcare, health behaviour and status, as well as service use and health costs.[1]

Since 1993, Macmillan has supported the development of cancer information and support services across the UK, and there are now more than 170. They vary in size, and are based in a variety of locations (including hospitals, libraries, primary care centres and even a shopping centre) to respond to local community needs. But they all offer a service that is:• tailored to the needs of each individual,

with guided access to information and support

• complementary to the work of the clinical team

• holistic, considering the range of support and care each individual may require

• able to provide suitable services on-site or signpost users to other sources of support.

Despite our successes so far, we know there are still people affected by cancer who do not receive the support and information they would like. While work has been done to address this with the availability of the Macmillan Support Line and mobile centres that travel to different communities, our vision is that all people affected by cancer, their families and carers, will have the information and support they need during their cancer journey. This will enable them to make the best decisions for them.

We will continue to invest in new services, and to support the development and improvement of existing services, to ensure all can offer the highest quality. Our priorities are:Integration• creating strong links between local partner

organisations and other Macmillan initiatives, such as Boots Macmillan Information Pharmacists

• embedding financial and work support advice, guidance and services locally

Innovation• looking into and testing new and innovative

ways to deliver high quality information and support services

Influence• working with key stakeholders to ensure

personalisation of information and support as part of local and national policy

Improvement• working to improve the content of

Macmillan information materials• working with our partners to ensure

consistent quality across the UK for information and support services.

We couldn’t have achieved so much without the time and expertise of countless people and partner organisations. We look forward to achieving even more in the next 20 years.


Further information

Kim Diprose

Information and Support Programme Manager


020 7091 2122

kdiprose @macmillan.org.uk


In this section

23 20 years of specialist support Kim Diprose, Information and Support Programme Manager

24 The right setting

Jamie Logan, Neuro-Oncology Clinical Nurse Specialist

25 Keeping patients informed Sarah James, Macmillan Patient Information Lead

26 Training volunteers together Rebecca Turner, Volunteer Training and Development Manager

27 Well-being in Wales Erica Sheppard, Macmillan Associate in Cancer Information and Support Services – Wales

References1 Patient Information

Forum. Making the case for information: the evidence for investing in high quality health information for patients and the public. 2013.

Celebrating 20 years of Macmillan cancer information and support services

For more information or a copy of our report email [email protected]

Keeping patients informed Sarah James explains how her work for two different organisations helps to keep people with cancer informed about their treatment

The Lynda Jackson Macmillan Centre, based at Mount Vernon Hospital, has provided information and support to

meet the holistic needs of cancer patients since it opened in 1993.

Although we make use of information resources produced nationally by organisations such as Macmillan, we also produce a number of our own resources that include information specifically for those receiving treatment at Mount Vernon.The high quality of these resources was acknowledged by the Centre for Health Information Quality (CHIQ) in 1999 and since then with numerous British Medical Association patient information awards.

Newly in post as Macmillan Information Lead in 2010, I was responsible for updating our information production process to meet the rigorous requirements of the Information Standard (IS). This is a quality assurance standard established to improve the quality of health and social care information. It ensures that the information we produce is clear, accurate, balanced, evidence-based and up-to-date.

Using my expertise in quality management systems, I implemented a systematic approach (while keeping paperwork to a minimum) to upgrading our information production process to comply with the IS. This required the inclusion of auditing, which isn’t necessarily something that sits comfortably with the ‘holistic’ nature of cancer support centres.

But, three years later, having completed the process, I’d encourage other information producers to go for Information Standard accreditation. It really isn’t as difficult as it may appear, and the benefits of having a robust and systematic review

process for our information resources are visible. It gives confidence to our patients and users about the quality of our service.

In my other role as Professional Officer at the Society and College of Radiographers, I’ve also contributed to cancer information projects within the remit of the National Radiotherapy Implementation Group (NRIG). In 2010, there were discussions within an NRIG subgroup about how some information resources provided to patients at that time by key national cancer charities, including Macmillan, did not include information about the very latest treatments. This was a concern, especially around techniques such as intensity-modulated radiotherapy (IMRT), image guided radiotherapy (IGRT) and stereotactic radiotherapy (SR).

This needed to be addressed, so in 2011, we met with Sue Green, Senior Information Development Nurse at Macmillan. Since then, working relationships have developed. I am now routinely contacted to contribute to, or recommend experts to help with, the review of new or updated resources that include radiotherapy content.

The Radiotherapy Information, Support and Review Forum, a Society and College of Radiographers Special Interest Group, is now working with Macmillan to ensure the charity’s radiotherapy content reflects current practice.

Wherever possible, I would recommend all local information producers make use of nationally produced information, if they are not already doing so. Good quality, generic information is often available. Using this will save us all valuable time and resources at a local level, so we can focus on any information that has to be produced locally.


Further information

Sarah James

Macmillan Patient Information Lead Lynda Jackson Macmillan Centre

[email protected]

Professional Officer The Society and College of Radiographers

020 7740 7238

[email protected]

A nurse-led histology clinic based in a Macmillan information and support centre is changing how test results are delivered

The right setting


‘ This clinic ... shows that information centres can be used as consultation areas’

Further information

Jamie Logan

Neuro-Oncology Clinical Nurse Specialist

King’s College Hospital

020 3299 8691

[email protected]

In 2011, we conducted a satisfaction survey among neuro-oncology patients at King’s College Hospital in London.

The results highlighted room for improvement in the way histology results were given.

Most patients completing the survey (90%) had rated the service as good, very good or excellent, and almost all (97%) stated they were given their diagnosis in clear and understandable language, within an acceptable time frame and in an appropriate setting. While some (13%), believed treatment options weren’t fully discussed, 10% felt unable to discuss concerns and 8% stated their diagnosis wasn’t given in an appropriate setting. In addition, 8% did not receive the contact details of a key worker. At the time of the survey, results were being delivered in an ad hoc manner on wards, either behind curtains or in day rooms.

With the survey feedback as our impetus for change, the nurse specialist team looked into innovative ways of addressing these concerns. This led us to establish a nurse-led clinic for delivering results to neuro-oncology patients and their carers.

The clinic is held in a Macmillan information and support centre away from the main hospital site, and is run by one of the clinical nurse specialists. The centre is not in a clinical area, so there is less demand for space and it is a relaxing environment with an ample supply of tea and coffee. Another advantage is the availability of information to meet the needs of patients and their families. This includes Macmillan-specific information, but also NHS Information Prescriptions, as the trust is a pilot site for this service. One initial concern was that the Macmillan branding

could increase anxiety for patients, but the benefits of the facility were deemed to outweigh this challenge. In fact, one of the key areas of the clinic’s success is the collaborative relationships that have formed between staff and the Macmillan team. On arrival at the clinic, patients and their carers are met with a smile, a cup of tea, and a non-clinical area in which to wait for their consultation.

Patient feedbackThe clinic was audited in its first six months. On average, it was attended by two to three patients each week, and 19 out of 30 patient questionnaires were returned. From this, 89% reported they were seen on time or within minutes of their appointment slot, 78% suggested the specialist nurse was excellent and obviously cared, while 21% felt it was evident the clinical nurse specialist cared, but more support was needed. Just one patient reported they would have preferred their consultant to have led the clinic.

The location of the clinic was exactly right for 57% of respondents, while a further 36% indicated they were happy with the location. One person felt the clinic was in the wrong environment, stating: ‘Macmillan branding everywhere made it very difficult to escape cancer.’ Overall, 73% of patients were very happy and satisfied with their consultation.

While the clinic is just for neuro-oncology patients, it has been presented to the trust oncology nurses forum. Other tumour site services are now looking into this model.

This clinic is an exciting change for patients and their carers and shows that information centres can be used as consultation areas. It raises both the profile of Macmillan and the nursing profession as a whole.

The Lynda Jackson Macmillan Centre received a Team Award at the 2013 Macmillan Professional Excellence Awards. You can read more on page 9.

To find out more about the Information Standard, visit theinformation standard.org

‘ Good quality, generic information is often available. Using this will save us all valuable time and resources at a local level’

Well-being in WalesErica Sheppard on how libraries in Monmouthshire are supporting the well-being of people affected by cancer

T he Macmillan in Monmouthshire Cancer Information and Support Service is based at Abergavenny

Library and operates across six libraries, two prisons and Nevill Hall Hospital. Our service is one of four similar local authority library projects in south east Wales. An overview of Macmillan’s work with libraries and how these four projects came about is featured in The First Incomplete Field Guide to Wellbeing in Libraries, which launched in January 2013.[1] The guide, funded by CyMAL: Museums, Archives and Libraries, a policy division of the Welsh Government, shows how libraries contribute to the government’s wider public health agenda. It provides a snapshot of the great things libraries are doing to support the health and well-being of people in Wales.

The guide explores a range of innovative activities libraries offer to local people. These activities support people to stay healthy, find jobs, improve literacy, reduce isolation, support their independence, meet new people and to understand more about their local community. References to Macmillan’s work with libraries gives a clear indication of the value of working with other organisations to develop services that directly meet health needs. Libraries are well placed to offer personalised information and support to the increasing number of people living with and beyond cancer.

At the Macmillan in Monmouthshire Cancer Information and Support Service, we organise various activity groups designed to support well-being, especially for people living with and beyond cancer.

Weekly ‘knit and natter’ sessions and board games groups are lively and fun, but also offer people an opportunity to discuss their problems and get peer support to deal

with issues. I am there to provide direct support. The groups also help to reduce isolation, and both are examples of a different model for delivering cancer support.

The well-being of local people is also supported through 12 regular shared reading groups delivered by the libraries and Macmillan. Shared reading is an important activity that has a proven track record in combatting stress, aiding relaxation and promoting literacy.[2]

To showcase the wide range of activities on offer across the county, I worked with staff to host a well-being event in April 2013. Visitors were given a taster of the activities available. We also highlighted a range of new cancer books, along with the Book Prescription Wales scheme, which offers titles to help overcome anxiety, depression and other emotional problems.

After this event, I was invited to deliver a workshop at the Chartered Institute of Library and Information Professionals Conference. Instead of a standard PowerPoint presentation, I used a colourful rug made of knitted squares to demonstrate how libraries are meeting the challenges of the well-being agenda and supporting people affected by cancer.

In these tough economic times, when the NHS is increasingly stretched, libraries have a significant part to play in promoting health and well-being. The field guide demonstrates that libraries are not just about books. Libraries in Wales are facing major changes to how they operate and are more aware of the need to work collaboratively with partners. Libraries are a valuable asset to the community with real impact, especially on psychological, economic, material, community, social and often physical and spiritual well-being. Our libraries are committed to meeting this ongoing challenge.


Further information

Erica Sheppard

Macmillan Associate in Cancer Information and Support Services – Wales

Abergavenny Library

01873 735980

[email protected]

For more information about libraries in Monmouthshire visit www.monmouthshire.gov.uk

For more information about shared reading contact The Reader Organisation www.thereader.org.uk

Find out about Book Prescription Wales at publichealthwales.org/health-promotion-library

References1 Welsh Government. The

First Incomplete Field Guide to Wellbeing in Libraries. Cardiff. 2012.

2 For links to research on shared reading, visit thereader.org.uk

Many Macmillan information and support services have dedicated volunteers at their core. One group of managers are sharing resources to boost volunteers’ knowledge and skills

Training volunteers together


Further information

Rebecca Turner

Volunteer Training and Development Manager


020 7840 4926

rmturner @macmillan.org.uk

Volunteers enhance our ability to provide high quality information and support services to people affected by

cancer. Ongoing training and development ensures volunteers are well equipped for their roles. Investing time and resources in training volunteers shows the true value of their commitment, helps to keep them engaged and has the potential to improve retention.

Sometimes it can be difficult to factor in training within a busy workload, but one group of volunteer managers has it sussed. Although based in different settings, they work together to share resources, ideas and training sessions among their volunteers.

The group consists of Debbie Smith, Manager, Macmillan Cancer Information and Support Centre at University Hospital of South Manchester; Suzanne Hindle, Volunteer Support Worker, Macmillan Solutions; Ali Davenport, Macmillan Community Outreach Officer, Manchester City Council Library Service; and Alice Munby, Macmillan Community Project Officer, The Christie NHS Foundation Trust.

How it all began‘When I started working here at the hospital, I began to work closely with one of the outreach workers from our local library-based Macmillan service,’ says Debbie. ‘From that grew collaboration and sharing. It expanded to include the others – we now meet up at network managers’ meetings and sometimes at Macmillan events, and share information about learning opportunities for our volunteers.’

‘Relationship building, communication and networking is important in seeking opportunities to share resources,’ says Ali. ‘It’s about making those connections, but

also looking at how services can support each other, perhaps through client referrals or picking someone’s brains about a particular query.

‘In the last six months, we have had a burst of training opportunities. We opened these out to volunteers from other projects and things have snowballed from there. Very quickly it has become common practice to share the training.’

The group members emphasise how opening training to volunteers from different services offers better return on your investment. ‘We held a cancer awareness training event with a Senior Nursing Lecturer at University Hospital South Manchester,’ says Suzanne. ‘We offered this training across our projects to ensure more volunteers could benefit from hearing a high quality speaker.’ Plus, says Ali, ‘Joint training can help raise awareness about our different projects and encourage volunteers to refer people to us.’

But it’s not just about attending a training course. Each member of the group ensures training and development is an ongoing process by sharing ideas through regular emails and telephone calls. ‘Much of the training of our volunteers is done informally ”on the job“ and is then reflected on afterwards in supervision, which also looks at further training needs,’ says Ali. Also, says Alice, ‘Volunteers are encouraged to attend regular team meetings and specialists are invited to talk about related subjects, such as cancer treatments.’

Volunteers are also shown how to access courses including communication and customer service skills on Macmillan's Learn Zone (learnzone.org.uk), and are directed to other sources of learning and information.

Managing Volunteers

Macmillan professionals can attend our ‘Working Effectively with Volunteers’ training course. Contact your local Volunteering Adviser to find out more:

In Scotland and Northern Ireland, contact Claire E Alexander on 0131 260 3720 or [email protected] In Wales, contact Rachel Biggs on 01656 867971 or [email protected]

In Central and South West England, contact Mel Merrill on 01458 835113 or [email protected]

In East Midlands and Northern England, contact Karen Smith on 01482 561068 or [email protected]

In London, Anglia and the South East, contact Janice Thompson on 020 7091 2358 or jthompson@ macmillan.org.uk

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Answers across 1 Lettuce 5 Bird 7 Man 8 Ice-cream 9 Niece 10 Grow 13 Wash 14 Deck 18 Envy 19 Alert 21 Hedgehog 22 Lie 23 Slat 24 NervousAnswers down 1 Lemonade 2 Tenpence 3 United 4 Energy 5 Burrow 6 Roam 11 Waterloo 12 Chatters 15 Knight 16 Hyphen 17 Danger 20 Cell

Your life and your choices: plan ahead – Northern IrelandMAC14376This resource aims to help people in Northern Ireland understand the importance of advance care planning. It contains useful forms and documents to help people make it known how they would prefer to be cared for. We also have a version of this booklet for England and Wales. A version for Scotland will be available in early 2014.

Worrying about cancer coming backMAC14215Information to help people cope with the fear of cancer coming back after treatment. This leaflet discusses common emotions, such as anxiety, fear and uncertainty. It also looks at positive steps that can be taken to cope with these feelings, as well as steps that can be taken to potentially reduce the risk of recurrence.

Revised

The Cancer Drugs FundMAC13305, 2nd edition

Cancer and fertility in menMAC12155, 3rd editionCancer and fertility in womenMAC12156, 3rd edition

The essential work and cancer toolkitMAC13294, 2nd editionA selection of resources giving practical tips and guidance for HR professionals, managers and employees about work and cancer. Resources include the Managing cancer in the workplace booklet and a DVD for employers, and booklets for employees including Work and cancer and Working while caring.

Order free copiesVisit be.macmillan.org.uk or call 0800 500 800. Some of our resources are also available on CD.

Clues across 1 Salad plant 5 Bath, cage or seed 7 Human being 8 Frozen dessert (3–5) 9 Sister’s daughter 10 Increase size 13 Cleanse with soap and water 14 Nautical platform 18 Avaricious desire 19 Prepared for action 21 Spiny nocturnal creature 22 A big fib 23 Thin strip in Venetian blinds 24 Timid

Clues down 1 Citrus drink 2 Tenth of a pound 3 Manchester football club 4 Get-up-and-go 5 Rabbit hole 6 Wander around 11 Battle that defeated

Napoleon 12 Gossips and natters 15 Round Table soldier 16 Word-linking

punctuation mark 17 Risk 20 Prison room

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When someone close to you has cancerMAC14292This booklet describes the emotional effects a cancer diagnosis can have on partners, carers, family

members and friends. It aims to help readers understand the emotions they are going through, and to let them know that help is available.

Mac Voice winter 2013 - be.Macmillan...Steve Richards, Director of Professional Engagement Macmillan...

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