For Macmillan professionals Issue 65 Summer 2013€¦ · up because of treatment, and travel costs could increase. That’s a massive challenge for anyone – let alone if you’re

For Macmillan professionalsSummer 2013Issue 65

Macmillan Specialist Oncology Dietitian

Rhian Collins

Delivering successful presentations

Sharing good practice

Contents

2 Mac Voice Summer 2013

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

Writers wantedMac Voice is for you. You can write about the issues that matter to you and share your knowledge with others. You don’t have to be an experienced writer to get involved – simply email macvoice@macmillan. org.uk or call 020 7091 2219

Contributors

Sue Acreman • Tracy Adjei • Juliet Bouverie • Rhian Collins • Allan Clark • Francesca Durrell • Helen Fieldson • Lindsey Fitzpatrick • Veronika Miskech Fricova • Emma Guise • Kathryn Hamling • Nicky Hand • Liz Henderson • Claire Keuls • Claire Monks • Angela O’Dell • Kajal Odera • Kerry-Lynne Pyke • Tara Rayment • Dr Paula Reed • Daniel Scott • Zoe Smith • Alison Stemp

Editorial boardCharlotte Argyle, Carers Support Manager Kathy Blythe, Macmillan Development Manager • Alison Foster, Macmillan Clinical Nurse Manager & Lead Clinician for Specialist Palliative Care • Alison Hill, Nurse Director, South West London Cancer Network Beverly Hurst, Macmillan Gynaecology/Oncology CNS • Susan Llewelyn, Macmillan Information Facilitator • Yvonne McKenna, Macmillan Lead Cancer Nurse • Barry McVeigh, Macmillan Development Manager • Heather Nicklin, Macmillan Specialist Palliative Care Social Worker Tim Iveson, Macmillan Consultant Medical Oncologist • Debbie Provan, Macmillan Project Lead Dietitian • Helen Tyler, Therapies Service Manager • Tracy Williams, Senior Information Development Nurse

Editorial team

Brian Burns • Rosie Cotter • 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_06_13

Printed using sustainable material. Please recycle.

News

4–11 The Macmillan Financial Guidance Service, making social care free at the end of life, the Cost of Cancer campaign, and much more

Q&A

12–13 Rhian Collins, Macmillan Specialist Oncology Dietitian, talks about the importance of nutritional support and the challenges of her role

Features

14 Hail fellow15 Evidence for rehabilitation16–17 Improving access to rehabilitation services18 Acute oncology 19 Roy Castle support group20–21 Support for children and young people 22 Information prescriptions training23 Caring for children24 Northampton colorectal support group25 Coming of age26–27 Voluntary care in Africa

Sharing good practice pull-out

Delivering successful presentations: Daniel Scott, Macmillan HR Learning and Development Consultant, shares his top tips.

Resources28 New and updated information from Macmillan

www.macmillan.org.uk/macvoice 3

Further information

Juliet Bouverie

Director of Services

jbouverie@ macmillan.org.uk

020 7840 7866

Editorial

Improving patient experience

In February the long-awaited report by Robert Francis into the scandal of Mid-Staffordshire Hospital was published. The report exposed a shocking sub-culture within parts of the NHS which time and again severely compromised patient safety and quality of care.

Alongside the range of recommendations made in the report, and new initiatives from the UK government, such as the Family and Friends test, Macmillan Cancer Support wants to see the introduction of effective measures to ensure improvements in patient care are happening on the ground.

First, we want the NHS to adopt a values-based approach to improving patient experience that recognises how staff feelings affect their relationship with patients. We have developed the Macmillan Values Based Standard (VBS) using eight behaviours we know can make a real difference to a patient’s experience of care. We aim to roll this out across the UK and we’d like to know how you can support us to do this.

Secondly, we have campaigned hard for governments across the UK to conduct an annual National Cancer Patient Experience Survey (CPES) so that managers and clinicians can understand what patients need and where we need to improve. We urgently want the CPES to be

Juliet Bouverie, Director of Services, on Macmillan’s response to the Mid-Staffordshire Hospital report

repeated in England and for similar surveys to happen in Wales, Scotland and Northern Ireland.

Macmillan has produced two toolkits to help trusts improve patient experience – one for England called Improving cancer patient experience – a top tips guide and one for Wales called Providing person-centred cancer care in wales: a guide for local health boards.

For copies of the toolkits, please contact Sue Gooderham, PA to General Manager (LASER) and PA to Head of Regional External Affairs, on 020 7091 2355 or [email protected]

You can also download the toolkit for England at tinyurl.com/macmillan-toptips and for Wales at tinyurl.com/mac-toptipswales


Sub heading

New partnership offers counselling support

In briefIsolationNearly a quarter (23%) of people with cancer lack support from family and friends during their treatment and recovery, according to research from Macmillan. The finding is revealed in the Facing the fight alone report. You can download it by visiting tinyurl.com/cdteqmj

Night shiftsA US study has suggested links between working night shifts and an increased risk of ovarian cancer. Women taking part who had worked overnight regularly were 49% more likely to develop early-stage ovarian cancer. However, scientists at the Fred Hutchinson Cancer Research Centre in Seattle, who led on the study, stressed that further research is needed.

Work support A new Macmillan report highlights the importance of vocational rehabilitation. To download Making the shift: providing specialist work support to people with cancer visit tinyurl.com/c6vnamv

RamblingWalking for Health, the scheme taken over by Macmillan and the Ramblers last year, has been given a brand makeover. Visit walkingforhealth.org.uk to see the new look.

Macmillan has joined forces with leading counselling and psychotherapy charity The Harbour, based in Bristol, to offer new specialist services for people with cancer and their carers.

Being diagnosed with cancer can have a serious impact on personal relationships. People react in different ways – some feel isolated, while others are overwhelmed with anxiety and thoughts about the future. It can be difficult to talk about the diagnosis with family and friends.

Sam Thomas, Chief Executive of The Harbour says, ’A diagnosis of cancer often brings with it a rollercoaster of emotions. There are many changes that people have to cope with, whether that is being newly diagnosed, coping with treatment or changes to their body as a result of the illness and its treatment. Whilst everyone may react differently, it can be very helpful to share these experiences as part of a regular group facilitated by an experienced therapist.’

The new, free service will develop therapeutic counselling groups for people at different stages of their illness, as well as carers.

Sam says, ‘At The Harbour, we have many years’ experience of working with people with life-threatening illnesses. We have seen how therapeutic groups can offer an opportunity to explore and understand feelings in a safe and supportive environment. We want to create groups for people who have been newly diagnosed, people who have finished cancer treatment, and also for carers, who are often forgotten but who are a vital help to others and often need support themselves.’

Maggie Crowe, Macmillan Development Manager, says, ’Cancer is the toughest fight many people will face, so it is important that they do not have to go through it alone. The Macmillan team which, in Bristol, now includes our partners at The Harbour, can support people every step of the way.’

More informationTo find out more about

the therapeutic groups being set up by The Harbour, contact Sam Thomas on 0117 925 9348 or [email protected]


News


News

Supporting cancer survivors1.8 million people are currently living with a diagnosis of cancer in England. This is expected to rise to more than three million by 2030. Many of these people are, and will be, people living beyond cancer treatment who have unmet needs.

Changing the way we support them is a priority – both in meeting unmet needs, and ensuring that we can meet the increasing demand financially.

The National Cancer Survivorship Initiative (NCSI), a partnership between Macmillan and the Department of Health, with support from NHS Improvement, has been

working to develop innovative solutions to these issues.

People living with and beyond cancer: taking actions to improve outcomes is a new report intended to support commissioners, providers and others to take the actions necessary to drive improved cancer survivorship outcomes. It sets out what we have learned about survivorship, including interventions to meet needs that have been tested and are ready to be spread across England.

More informationVisit ncsi.org.uk

The 2013 Macmillan Professionals event takes place from 7–8 November at The Palace in Manchester and focuses on integration in cancer care.

With more than 350 Macmillan professionals attending, it’s an unparalleled networking and learning opportunity.

Visit macmillan.org.uk/professionals to learn more.

‘At The Harbour, we have many years’ experience of working with people with life-threatening illnesses’

6 Mac Voice Summer 20136 Mac Voice Spring 2013

News

JulyAction Mesothelioma Day5 Julywww.mesothelioma.uk.com

AugustDouglas Macmillan’s birthday10 Augustwww.macmillan.org.uk/aboutus

SeptemberBlue September (Male cancer awareness month)www.blueseptember.org.uk

Lymphatic Cancer Awareness Week9–15 September www.lymphomas.org.uk

World Lymphoma Day 15 Septemberwww.lymphomas.org.uk

World’s Biggest Coffee Morning27 Septembercoffee.macmillan.org.uk

Macmillan in Wales wins Third Sector awardMacmillan in Wales has been named the Most Admired Organisation at the Third Sector Awards Cymru in Cardiff.

Macmillan in Wales was also named runner-up in the Class Award for Communications for the Counting the Cost of Cancer campaign in 2012, which secured substantial policy change for people affected by cancer in Wales.

Susan Morris, General Manager for Wales, says, ‘We are delighted to have won the Most Admired Organisation Award and to have been named a runner-up for the Class Award for Best Communications.’

‘Counting the Cost of Cancer has delivered real change in Wales and our focus is now making sure that people with cancer are getting the financial advice and support they need.’

The awards received more than 100 entries for its six award categories.

More informationVisit macmillan.org.uk/wales


News

If you’re living with cancer, you can sometimes feel powerless, like it has taken over your whole life. Feeling out of control of your finances when you’re living with cancer can be a huge worry.

At the end of 2011, we launched the Financial Guidance Service. Macmillan’s team of dedicated experts provides free, impartial guidance and support so people can make informed financial decisions and focus on what’s really important to them.

Craig Syme, one of Macmillan’s financial guides, tells us more: ‘People face all kinds of financial problems when they’re living with cancer. They might not be able to work, but they still have a mortgage to pay, heating bills might go up because of treatment, and travel costs could increase. That’s a massive challenge for anyone – let alone if you’re coping with cancer.

‘The most common issues people come to us with are pensions and early retirement, mortgage payments and

insurance enquiries, including life insurance, critical illness and travel insurance. It may not be the person with cancer who calls us. It’s very often a family member or friend.’

Last year, the team spoke to more than 2,200 people, and helped achieve total financial gains of around £7.8 million. Further to the support people have received, Macmillan has received more than £10,000 in donations as a result of calls to the service.

More informationFor help making sense of their finances,

people affected by cancer can call the team free on 0808 808 00 00 or visit macmillan.org.uk/financialguidance. The service is available Monday to Thursday, 9am to 5pm, and Friday, 9am to 4.30pm. The general Macmillan Support Line is available on the same number, Monday to Friday, 9am to 8pm.

World’s Biggest Coffee Morning on Friday 27 September is a chance to bring together colleagues and people you support, while fundraising for people affected by cancer. It’s also a great way to promote your service.

Last year Evelyn, a Macmillan Palliative Care Nurse Specialist in Forth Valley Royal Hospital, Scotland, and her colleagues organised events at the hospital and a nearby coffee shop. Throughout the day they met local people, told them about the services they provide and raised money for Macmillan in the process.

Evelyn says, ‘The biggest reward for me is the feeling of contributing outside my role to Macmillan’s work. And also being able to use the event to take the message out into the local community.’

Order your coffee morning kit today at coffee.macmillan.org.uk

Financial Guidance Service

There have been more than 15,000 visits to the Support and Information Service at the new University College Hospital (UCH) Macmillan Cancer Centre in London in its first year.

Hilary Plant, Joint Clinical Lead at the Macmillan Support and Information Service, says, ‘We are delighted. This figure represents patients visiting the UCH Macmillan Cancer Centre to attend the Macmillan Support and Information Service on average one in every five visits.’

Charles O’Hanlon, a patient from East London being treated for the second time for Hodgkin Lymphoma, described the Support and Information Service as a lifeline. He had been able to discuss vital decisions about his treatment with Macmillan Support and Information service staff, receive counselling and use complementary therapies.

‘I used to see the name Macmillan written on the door and think, “That’s not for me, that’s for people who need palliative care”. But now I am a huge fan and use the centre regularly. The service is with you throughout your cancer journey and afterwards.’

Jess Tudor-Williams, Cancer Division General Manager for UCH, says she is proud of what staff and volunteers have already achieved, as the centre works towards becoming a world-class cancer centre.

UCH update


News


News

A pioneering service that gives valuable emotional and practical support to people affected by cancer is celebrating its 10-year anniversary.

The West Dunbartonshire Macmillan Carers Service was the first of its kind in Scotland to provide assistance by offering support from a team of paid carers and volunteers.

Macmillan Development Manager Trisha Daniel says, ‘We have seen the difference this service has made in West Dunbartonshire and hope more people will volunteer, so we can provide even more support in the local area.’

The service is run by Macmillan and the West Dunbartonshire Community Health Care Partnership, which brings together West Dunbartonshire Council and NHS Greater Glasgow and Clyde. The service is there for anyone affected by cancer in West Dunbartonshire and offers a range of support that is tailored to people’s needs. This can include help with shopping, assistance with appointments and other support that gives people a break from some of the difficulties that having cancer may bring.

Barbara Meyers, who is recovering from breast cancer and who receives

support from the service says, ‘The service helped me get out of my cancer “hibernation”. I feel as though I have been cocooned by it. It was hard getting out my cancer cave but the service has helped me get out and get on with my life.’

More informationTo find out more or to volunteer,

call the service on 01389 608010.

We included a readership survey in the Winter 2012 issue of Mac Voice. The survey was also posted online at macmillan.org.uk/macvoice and distributed through the Mac Mail e-newsletter.

Our aims were to better understand:• how you value Mac Voice• what types of articles you prefer• how you use the information• whether the magazine has an impact on your professional practice,

and the care of people with cancer.

In total we had 264 responses. Some of the key findings included:• 40% rate Mac Voice as very valuable. A further 52% said it is somewhat

valuable, giving an overall valuable score of 92%.• 85% say they’ve used Mac Voice to share best practice with colleagues.• 83% say that Mac Voice has a positive impact on the service they provide

to people living with cancer.

There were also many useful suggestions about how we can improve the magazine that we will be looking to take on-board.

Watch this space for a detailed look at the findings in the next issue of Mac Voice. We will also be making the full results available online.

Pioneering volunteer service celebrates 10 years

Readership survey

Two in three cancer patients in England who died in hospital, wanted to die at home.1

These figures come from research that was highlighted by Macmillan in March, as a cross-party committee of MPs and Lords strongly recommended that the UK government introduce free social care for people at the end of life. The committee recommended that this should happen ‘at the earliest opportunity’, to enable more people to die in the place of their choice2.

Dorothy died in hospital from colon cancer in 2012 aged 48. Her husband Alex, from Lancashire, says, ’Dorothy was in hospital for six weeks at the

end of life and was admitted eight or nine times in that last year. During all this time, no one told her she was at the end of life or asked her about what she wanted. No one offered us social care support. I believe it could have made a big difference because caring for someone can be so tiring and stressful; you never get to clock off. My biggest regret was not getting her home to die. I’m going to have to live with that for the rest of my life.’

Macmillan is urging the government to make social care free for everyone in the last weeks of life before the end of this Parliament in 2015.

More informationVisit macmillan.org.uk/

socialcare to find out more about the campaign.

References1 Office for National Statistics. Additional

analysis from the National Bereavement Survey (VOICES). 2011.

2 House of Commons and House of Lords Joint Committee on the Draft Care and Support Bill. Draft Care and Support Bill report. 2013.

Making social care free at the end of life

We’ve launched a brand new video explaining in a nutshell how you can get the best from be.Macmillan.

The video gives a simple introduction to everything you need to make your job easier. Create your own business cards, order information booklets, and find the right merchandise to promote your services.

Watch the video now at tinyurl.com/bemacprofs

Mac Voice is very valuable

Mac Voice is somewhat valuable

Mac Voice is valuable

Four in five people living with cancer are hit with an average cost of £570 a month as a result of their illness – the same as the average mortgage.

People living with cancer should be focusing on their treatment and recovery, not worrying about their wallets. But, from fuel costs for trips to the hospital through to the worry of a reduced income, the price of living with cancer can often be too high.

We commissioned the University of Bristol to carry out a piece of research looking at how cancer impacts on people’s finances. The results revealed that, as the economic crisis continues to bite, many people have to cope with the hidden costs of cancer and treatment combined with, for those who are unable to continue working as before, a drop in income. One in three people experience a loss of earnings, on average a shocking £860 a month, because they are unable to work or have to cut down their hours. For six in seven people with cancer, their monthly expenses also shoot up by £270 on average. This includes:

• travelling to appointments, which costs two in three people £170 a month

• day-to-day living costs, which cost more than half of people £63 a month

• car parking fees for outpatient appointments, which costs three in eight people £37 a month

• fuel bills, which cost one in three people £24 a month

• over-the-counter or prescription medicines, which cost one in five people £8 a month

• home help or live-in care, which costs one in twenty people £56 a month.

The research also showed that the financial burden of cancer is not the same for everyone. Those in work, and those with children, are more likely to bear the costs of their illness and the average monthly total is twice as high as for those who are not in work or who do not have any children. Unfairly, the impact for those on low incomes is twice the size of those on the highest incomes. Similarly, those

with a rarer cancer are hit with a bill twice the size of that of someone with colorectal or prostate cancer.

This isn’t right. That’s why we have launched a three-year UK-wide campaign, Cancer’s Hidden Price Tag, to ensure that people with cancer are focusing on their treatment and recovery, not feeling anxious about their finances.

We are calling on governments, businesses and the NHS to act urgently to ensure the right support is offered at the right time, so that people living with cancer are not left to deal with the terrible financial strain alone. It is vital that people with cancer are given financial support and information at key points during their cancer journey to help them deal with the hidden costs of their illness.

More informationVisit macmillan.org.uk/

hiddenpricetag or contact Claire Keuls, Media and PR Officer for Campaigns and Services, on020 7840 4872 or email [email protected]

www.macmillan.org.uk/macvoice 1110 Mac Voice Summer 2013

NewsNews

The partnership between Macmillan and Boots is inspiring people affected by cancer to get active.

It has been well documented that safe and appropriate physical activity can significantly reduce the impact of long-term side effects of some cancer treatments, such as bone thinning, muscle wasting, heart damage and fatigue. Taking part in physical activity has also been shown to have a positive impact on patients suffering from depression during their treatment. Physical activity can help to prevent and manage other long-term conditions, such as type 2 diabetes, cardiovascular disease and chronic obstructive pulmonary disease. This is important, given the prevalence of co-morbidities in the cancer population. There is also emerging evidence that physical activity may help reduce the relative risk of recurrence, and the disease progression of some cancers.

One thing we do know is that physical activity can have the added benefit of allowing patients to regain a sense of control over their lives. As part of the Boots Macmillan

partnership, we hope to encourage more positive conversations at a local level and inspire more people living with cancer to be more active.

To support this, some of our Boots Macmillan Information Pharmacists have undertaken additional training, developed jointly by Boots and Macmillan, to help support Boots customers directly in store. They will also be able to signpost them to additional support services in their local community, and to resources, making it even simpler to take small, achievable steps, quite literally.

To provide an additional avenue for information provision around physical activity, Macmillan has produced a new, free, exercise DVD to help people get started. The Get active, feel Good DVD, which is inside the wrapping of this issue of Mac Voice, features a range of exercises for all abilities and is suitable at all stages of treatment. There will be increased information in Boots stores about the benefits of physical activity, to encourage conversations with the Boots Macmillan Information

Getting active with BootsPharmacist, who can also dispense the DVD as appropriate.

With more than 1,300 Boots Macmillan Information Pharmacists, we will be able to support cancer survivors, their family and friends, who may not be actively seeking information about cancer through traditional ‘health’ channels, but who may need this support more than they realise. Without the need for an appointment, our Boots Macmillan Information Pharmacists and in-store healthcare teams are able to supplement advice they may already be seeking from their medical team, and likewise, help start new conversations.

‘Regular physical activity is fundamentally important after cancer – taken regularly, it has a major impact on the speed of recovery after cancer treatments as well as improving the chance a of long-term, fulfilling survival’

Prof Robert Thomas, Consultant Oncologist at Bedford and Addenbrooke’s Cambridge University Hospitals

To find out more about the benefits of promoting physical activity to your patients and to access our support resources , or order copies of the DVD and our Move more pack, please visit macmillan.org.uk/professionals

to help people overcome those side effects. This then allows patients to meet their nutritional requirements to continue through and recover from their treatment better.

What projects are you currently working on?I am the catering lead dietitian for the cancer centre. The main project I’m working on is implementing a new menu for the hospital’s inpatients, which should be in line with All Wales Nutrition and Catering Standards for inpatients. I’m also on the All Wales Menu Group, which is aiming to establish standardised menu options for all hospitals in Wales to use.

What are the greatest challenges of your job?Trying to help people to be better nourished while experiencing horrible side effects is very difficult. It’s also a challenge trying to adapt our advice to meet individuals’ needs, taking into account the side effects to make sure that we are meeting their nutritional requirements. That’s why we are trained in excellent communication and motivational skills.

How do you deal with the most difficult aspects?I suppose I try not to think about work outside of it. If you think about it too much, it could make you anxious and low in mood. Also, I see the patients as themselves, more than I see their diagnosis. I think about how I can help them in terms of the point they are at in their treatment.

What are your job’s rewards?The most rewarding aspect is getting to know your patients, because you really do see them through the thick of their treatment. Also, seeing them at the end, when they’ve been through it and

Name

Rhian CollinsMacmillan Specialist Oncology Dietitian

In postSince April 2010

LocationVelindre Cancer Centre, Cardiff

[email protected] 02920 615888


they’re out the other side; when the side effects have eased off a bit, they’re eating better and gaining weight. There’s really nothing nicer to see.

What qualities are most useful in the role? Empathy is an important quality. Understanding how the patient is feeling and looking at this objectively benefits them greatly. Also, a little bit of the time it’s about having a good sense of humour. As a result, I get on very well with my patients. Furthermore, if someone is given a diagnosis that is either terminal or palliative, you shouldn’t change the way you treat that person. These are important qualities for me in this role.

What projects are coming up?I’m working with the gynaecological consultants to develop a bowel obstruction pathway. This will be

helpful for patients admitted on to the ward with bowel obstruction resulting from a gynaecological cancer, to ensure that their nutritional needs are met. I’m also a member of a group within Velindre that is establishing links with Sierra Leone to improve oncology services there.

Can others learn from your role?Yes, and we are always, in a way, looking to advertise what we are doing at Velindre, through local and national conferences, posters, talks, articles in journals and discussion. If you’re doing such good work in one place, I think it should definitely be disseminated.

What were your previous roles?I worked in the University Hospital of Wales as a Band 5 (basic grade) dietitian, for a year and a half. That was a rotational post, gaining experience in different specialties.

Is your present role a new position and how did it come about?There were two dietitians at Velindre and one dietetic assistant, prior to this role being developed. But the clinical workload was large and two dietitians alone couldn’t cover it. They prioritised head and neck and upper gastrointestinal (UGI) cancers, as these patients require intensive nutrition support. There was a limited service for patients

with other cancers including lung, colon and gynaecological, due to a lack of dietetic support. In addition, treatments have changed and services have developed, highlighting the importance of dietetic input. So that’s why this role was developed.

Was there anything specifically in your background that made you suitable?I’d done some oncology work at the University Hospital of Wales, specifically working with UGI cancer patients who had gone through surgery. Also, a lot of work I did at the University Hospital of Wales was based on nutrition support, which allowed these skills to be transferrable.

What does the job involve?The other Band 6 (specialist) dietitian and I complete six-monthly rotations. One of those six-month periods is covering the wards, seeing people with all kinds of cancers – lung, colon, gynaecological and some head and neck – a huge range. We provide nutrition support to patients who are receiving or completed treatment, including chemotherapy and/or radiotherapy. I also cover general outpatients during that rotation. The other six months revolve around covering UGI patients only – oesophageal, stomach and pancreatic cancer, primarily. And that role is generally more outpatient-based, as five consultant clinics are covered.

How does the work benefit people with cancer?Because food is such an important aspect of everyone’s life, and some of the major side effects of chemotherapy and radiotherapy include poor appetite, vomiting, constipation, diarrhoea and weight loss, we provide a range of advice



Feature Strategic leadership

Hail Fellow Evidence for rehabilitation Liz Henderson, Network Nurse Director and Macmillan

Survivorship Programme Lead, tells us about being a Fellow of the Royal College of Nursing

Further information

Liz Henderson

Network Nurse Director and Macmillan Survivorship Programme Lead

Northern Ireland Cancer Network

028 9056 5860

[email protected]


Sue Acreman on the Cancer and Palliative Care Rehabilitation Workforce Advisory Group

Considering the evidenceProfessional bodies representing dietetics, occupational therapy, physiotherapy and speech and language therapy nominated working groups to provide consensus on what evidence to include. This was then ratified by expert reference groups from the professions. Each professional working group looked at a range of papers and considered whether the evidence filled any gaps in the two existing reviews, and whether it was ‘good enough’ to be included. Particular attention was paid to palliative and end of life care, as the 2009 and 2012 reviews provided little or no evidence in these areas. Much of the evidence was deemed acceptable for inclusion in the pathways. The two published reviews provided a variety of evidence to justify a range of clinical interventions, and a consensus document will be available in the near future.

Filling in the gaps The project’s aims were to furnish the pathways with evidence and provide a steer for AHPs and other members of multidisciplinary teams who may care for people with cancer in the course of their work, but may not have in-depth knowledge and experience in this specialised area of care. The results have revealed some gaps in the evidence. AHPs and others are encouraged to fill these gaps by participating in relevant research. We know that many of the interventions we carry out benefit those who receive them. We now need to prove it through research.

Further information

Sue Acreman MSc RD FBDA, formerly Chair of the National Cancer Rehabilitation Advisory Board and a Consultant AHP in cancer rehabilitation (now retired)

029 2086 3450

sue_acreman@ hotmail.co.uk

A Fellowship is the highest endorsement that the Royal College of Nursing (RCN) can bestow on

a nurse and is given to professionals who have made an exceptional contribution to nursing. In 2011, the RCN awarded Liz Henderson, Nurse Director at the Northern Ireland Cancer Network (NICAN) and Macmillan Cancer Survivorship Programme Lead, the Fellowship for exceptional leadership and the strategic development of cancer nursing services in Northern Ireland.

The Fellowship was, in fact, one of a string of honours Liz has received, along with an OBE in 2010 for services to healthcare and, in 2012, an RCN Outstanding Achievement Award for exemplary leadership of, and contribution to, cancer nursing in Northern Ireland. Liz sees these recognitions as ‘a door-opener when it comes to trying to influence change’. Service and practice development has been the main motivation for Liz since she worked in oncology nursing at the Royal Marsden in the 1980s. ‘Where you have nurses with a passion for development,’ she says, ‘you can achieve so much.’

Leadership and practice developmentAmong Liz’s achievements is her facilitation of practice development (PD) which began when she helped to establish and then participated in a PD programme between St James Hospital, Dublin and Belfast Cancer Centre. Subsequently, she led a two-year PD programme for cancer and palliative care clinical nurse specialists, facilitating a range of activities that helped participants: • develop a sense of the values and beliefs

that guided their role and their work

• understand the culture and context of their workplace1

• support the development of a person-centred inquiring culture that integrates research, practice development and clinical leadership.2

‘The outcomes of the project included the development of leadership skills and knowledge among the clinical nurse specialists (CNS), as well as fresh insights into, and confidence in, their nursing expertise and the unique contribution of the CNS role,’ Liz says. ‘Taking time to engage in active learning through critical reflection and problem solving, and seeing practitioners take responsibility for developing their practice, is such a worthwhile activity because it results not only in personal and professional growth, but also in improved person-centred care.’

Research Liz has published a number of significant research-based papers about strategic leadership in cancer nursing.3,4 She has presented research papers as far afield as Italy and Australia and is currently a reviewer for the journal Cancer Nursing Practice.

‘When the RCN awarded me the Fellowship, it was partly for publications that went on to influence services in Northern Ireland and abroad,’ Liz says.

As Nurse Director of NICAN, Liz draws on PD knowledge and skill to encourage people across cancer services in Northern Ireland to adopt a person-centred approach. This attitude is also core to her approach towards cancer survivorship, an area in which she is leading for Macmillan.

Further reading

NHS National Cancer Action Team. Cancer and Palliative Care Rehabilitation Workforce Project: A Review of the Evidence. November 2009. http://ncat.nhs.uk/sites/default/files/NCAT_Rehab_EvidenceReview.pdf

NHS National Cancer Action Team. National Cancer Rehabilitation Advisory Board Cancer and Palliative Care Rehabilitation: A Review of the Evidence Update. January 2012. http://ncat.nhs.uk/sites/default/files/NCAT_Rehab_EvidenceReview__2012FINAL24_1_12.pdf

Cancer rehabilitation pathways and the National Workforce Model are available from http://ncat.nhs.uk/our-work/living-beyond-cancer/cancer-rehabilitation#

Sue would like to thank the members of the reference groups for their assistance.

The Cancer and Palliative Care Rehabilitation Workforce Advisory Group was convened to evaluate

the contribution made by specific Allied Health Professionals (AHP) to cancer care pathways. The AHP groups for consideration were physiotherapists, occupational therapists, dietitians and speech and language therapists. The group met from 2007 to 2010 and addressed a range of issues. These included the production of clinical pathways and a workforce data model, both of which needed underpinning evidence showing the effectiveness of AHP interventions. This preliminary work led to subsequent commissioning of a review, originally published in 2009. This piece of work covered eight tumour sites and 11 symptoms, and was updated in 2012 to include three new tumour sites. Methods of gathering information included locating studies through databases and working with experts in the field. These methods were designed to be as transparent as possible and provide a broad overview of the evidence. However, the 2009 review looked only at randomised control trials, non-randomised control trials and systematic reviews. As such, there was a large volume of peer reviewed evidence that deserved a ‘second look’. It is accepted that there needs to be much greater emphasis on formalised research, such as the research included in the two reviews from 2009 and 2012 and it is heartening to note the increase in this type of research between the two published reviews.

Evaluation Feature

References 1. McCormack B,

Henderson L, Wilson V and Wright J. The Workplace Culture Critical Analysis Tool. Practice Development in Health Care. 2009. 8(1) 28–43.

2. Henderson E. Critical Creativity in the development of clinical nurse specialists practice. Revealing Nursing Expertise through Practitioner Inquiry. Blackwell Publishing. 2009.

3. Using Practice Development Approaches in the Development of a Managed Clinical Network. International Practice Development in Nursing and Healthcare. Blackwell, Oxford. 2008.

4. Developing a strategic framework for cancer nursing research. European Journal of Oncology Nursing. 2004. 8(3): 262–265.


• avoiding complications and admissions• supporting reduction in the length of

inpatient stay• positive feedback from patients

and families• integrated care with community

and inpatient colleagues• appropriate referrals to community

services• seamless support.

The futureAs you can read in Brian’s case, in the panel on the top right, his illness, life’s narrative, social situation, relationships, hopes and interests all played a significant part in how he responded to his problems. Yet, sadly, despite the growing literature and policy supporting a holistic view of cancer treatment, the prevailing culture in secondary care is still the medical model.4 The hope is that this project will support the development of a truly holistic, rehabilitative and multidisciplinary team approach towards achieving the best outcomes for patients undergoing active treatment.5

As a Macmillan Occupational Therapist, I enable ‘people to achieve health, wellbeing and

life satisfaction through participation in occupation’.1

Patients and carers experience major changes in their lives whilst undergoing cancer treatment. Some patients are admitted to hospital because they cannot cope with the daily challenges that treatment regimes bring.

During my 15 years’ oncology inpatient experience, many patients have described problems that could clearly have been predicted and prevented, or at least lessened, if they had been seen earlier on in their pathway.

Radiotherapy and chemotherapy can be emotionally and physically demanding, involving time off work, juggling home life, dependency on friends and family, long commutes and waiting around for hours in clinics. Combined with other risk factors such as co-morbidities, frailty or lack of support, these can affect symptom control, tolerance of continuing treatment and future health and social care needs.

With this in mind, I submitted a case of need for two years of Macmillan funding for an OT project manager and assistant post,

to develop and pilot a service to oncology and haematology outpatient clinics. The application was successful and the project commenced in April 2012, and is due to be evaluated by March 2014. Its main aims are to:• help reduce the impact that cancer can

have on the physical, functional, social and emotional wellbeing of patients and their families

• support approaches that help prevent avoidable admissions and reduce the length of inpatient stays.2,3

Patients are referred by oncologists, radiographers, chemotherapy nurses and cancer nurse specialists. The patient is contacted by phone to agree an appointment time, normally on the same day as their treatment or clinic appointment.

Outcomes so farThe service focuses on early interventions using enhanced recovery principles, self-management and fatigue-management tools, health promotion, exercise scheme referrals, and fostering activities and behaviours that encourage wellbeing. These have already contributed to the project’s positive outcomes, which include:


Feature Occupational therapy

Improving access to rehabilitation servicesHelen Fieldson describes progress on a two-year project that is developing and delivering occupational therapy to oncology and haematology outpatient clinics at Lincoln County Hospital

Further information

Helen Fieldson BSc (Hons) Adult Cancer Care Macmillan Occupational Therapy Project Lead

United Lincolnshire Hospitals NHS Trust

[email protected]

Timely intervention for BrianBrian was receiving radical treatment for prostate cancer. He was referred to me by a radiographer.

‘Without doubt, the diagnosis of my prostate cancer was an unexpected and unwelcome intrusion in my life,’ Brian says. ‘In my case, with my congenital disability of the legs, the effects of the treatment were exacerbated and caused more distress than I could have anticipated. My ability to cope with the side effects of the radiotherapy, my independence and my confidence very quickly disappeared and I became quite depressed.’

Brian and I identified priorities for his daily activities, including roles, responsibilities and relationships, looking at his strengths and problems. We explored the impact of his changing physical and emotional needs, his home environment, radiotherapy routines and the side effects of treatment on his wellbeing. Together, we identified strategies to help him manage these challenges, which in turn helped him deal more effectively with a necessary inpatient stay, resulting in a timely discharge home.

‘There is no doubt,’ Brian adds, ‘that Helen’s timely intervention in my life during the time I was suffering the lows of cancer treatment provided the much-needed emotional and practical help, as well as the friendship I needed to become, once again, more positive about my future.’

References1 British Association

of Occupational Therapists and College of Occupational Therapists. Definitions and Core Skills for Occupational Therapy. 2009.

2. Department of Health. Improving Outcomes: A strategy for Cancer. 2011.

3. NHS improvement. Fulfilling the Potential: A Better Journey for Patients and a Better Deal for the NHS. 2012.

4. Macmillan Cancer Support. Allied Health Professionals in Cancer Care: An Evidence Review. 2010.

5. NHS East Midlands Cancer Network. Delivering the Supportive and Palliative Care Improving Outcomes Guidance Across East Midlands: Priority 8 – Rehabilitation Services. 2010.

Occupational therapy Feature

You can now apply for Macmillan’s learning and development (L&D) grants online.

View the learning and development grants website at grants.learnzone.org.uk


In 1999, nurses at University Hospitals Coventry and Warwickshire NHS Trust identified a gap in support for patients

with lung cancer. The nurses produced a short questionnaire and sent it to lung cancer patients who attended the oncology clinic. It asked patients what support they felt they received, what levels they needed, and if they would attend a support group just for people with lung cancer. The responses suggested that a support group was needed and would be well attended.

Following discussions with the Roy Castle Lung Cancer Foundation, the Coventry Roy Castle Lung Cancer Support Group was set up. The first meeting took place in November 1999 and feedback on the day was quite positive. Many of the patients attended subsequent meetings.

The meetingsAll patients who have been diagnosed with lung cancer are invited and encouraged to attend. Family members are welcome too. Generally, patients say they come away feeling that they are not alone, with an understanding that others have the same disease, undergo the same treatment and face similar problems. With lung cancer, the media often stresses short survival times following diagnosis. Yet, we have patients who have been attending the group meetings for several years, and newly diagnosed patients who find meeting them a very positive experience. We address various needs at the meetings. The nurses may give a talk on managing anger or breathlessness, or get people

Roy Castle support groupLindsey Fitzpatrick on the Coventry Roy Castle Lung Cancer Support Group

to do relaxation exercises. We’ve had many speakers over the years, including Macmillan and Citizens Advice Bureau representatives, oncologists, complementary therapists and a pathologist who brings resected specimens with him, which always goes down well, as patients appear to be interested in what their cancer looks like.

We often allow time for patients to talk about issues that concern them, while other members of the group listen and offer helpful advice. The group has changed many times over the years, but the feel remains positive and, sometimes, jovial. Some good friendships have developed.

Philipa’s positive gain‘The support group is exactly how its described,’ says group member Philipa. ‘I initially went because I felt very isolated after my diagnosis and surgery. I met people in a similar situation to me, who understood how I felt and were able to offer me help and support. The group offered me a positive way to gain reassurance in a relaxed and friendly environment.

‘We offer each other support and are able to give positive feedback to new members who may be feeling vulnerable. I know that if I have worries or concerns, the nurses are always there to talk to, whether at the actual meetings or on the phone. Their support is invaluable to us all.

‘I have made good friends in the group. We laugh, we cry and we support each other. I know how important the group is, not only to me, but also to many other people.’

Lung cancer Feature

Further information

Lindsey Fitzpatrick

Macmillan Lung Cancer Clinical Nurse Specialist

University Hospitals Coventry and Warwickshire NHS Trust

024 7696 5505

lindsey.fitzpatrick@ uhcw.nhs.uk

18 Mac Voice Spring 2013

Feature Service delivery

Acute oncologyNicky Hand on the Macmillan Acute Oncology Assessment Unit at South Tees Hospitals NHS Foundation Trust

Further information

Nicky Hand

Macmillan Lead Nurse and Nurse Consultant

South Tees Hospitals

01642 850850

[email protected]

The publication, on 24 August 2009, of the National Chemotherapy Advisory Group report Chemotherapy

services in England: Ensuring quality and safety highlighted a number of areas of chemotherapy services requiring review. By far the most sweeping of its recommendations was that all hospitals with an accident and emergency (A&E) should establish an acute oncology service, bringing together oncology, acute and emergency medicine.

South Tees Hospitals NHS Foundation Trust has a long history of working in partnership with Macmillan Cancer Support. The successful implementation of an acute oncology service, through initial funding of two nursing posts by Macmillan, has enabled the trust to develop the concept of an acute oncology service and secure a purpose-built assessment unit that works alongside it.

With a grant from Macmillan, a traditional six-bedded ward was remodelled and can now take three unwell patients from primary care. It also has a seating area for triage where patients experiencing symptoms from their disease, or side effects, can be assessed and, if necessary, be treated quickly and effectively without having to attend the A&E department. The advantages of this model are:• patients are assessed quickly and

effectively by oncology-trained doctors and nurses

• treatments begin without delay, such as antibiotics for neutropenic sepsis

• nurse-led services or pathways are established

• avoidance of unnecessary admissions to inpatient beds

• reduced length of stay once the underlying medical condition has been treated, allowing the patient to be discharged more quickly and efficiently.

Admissions The Macmillan Acute Oncology Assessment Unit opened on 5 November 2012. By 5 January 2013, it had received 98 admissions and had seen a significant improvement in the cancer patient pathway. Reasons for admission vary, with suspected neutropenic sepsis and nausea and vomiting being the most common. Of those admitted, 65% were discharged the same day, requiring no inpatient stay. Of those discharged, one patient was reassessed and subsequently admitted within a 12-hour timeframe. Patients who are acutely unwell and require admission following assessment using the UKONS 24-hour triage tool are admitted to the nurse-led unit, assessed and treated appropriately.

Patient surveyA prospective patient experience survey has been developed, which shows that patient and carer experience of the unit is high. Responses included such comments as:• a professional team• a calm environment to be treated in• excellent service and set-up in the unit• very helpful staff• the service we received was excellent• a very pleasant ward to be treated

and diagnosed in• staff were very nice, they couldn’t do

enough for us• all staff were extremely helpful

and thorough• staff were very friendly and explained

everything that was happening.

‘We also take breaks for drinks and talking and listening – that most vital thing that I see Macmillan Solutions volunteers provide so naturally’


‘Pull out quote here. Untur, illendebis audi bernam restiis eaquis sus restio ea dolorecat.’


about creating memories, listening out for children’s questions and talking through how they may respond.

Successes to dateDuring the past year we have worked hard to get our service known across Surrey by visiting hospital and hospice teams, as well as schools and other voluntary organisations. Some of our achievements include:• building working relationships

with local hospices, sharing skills and facilitating referrals

• visiting schools to discuss the staff’s concerns about serious parental illness and bereavement among children, including the development of bereavement plans

• support and advice to key workers in schools such as home-school link workers, who already have good relationships with children and their families

• sibling groups. To date, there has been one with an older group thinking and talking about their experience. We are now talking with Royal Surrey County Hospital

(RSCH) about developing a group for children and young people, with the same, or similar, diagnoses, who are experiencing the loss of their peers

• one-to-one play therapy for some of the more vulnerable children in five schools across Surrey.

Future plansWe have a number of plans for the service. First, we hope to develop the role of volunteers, both in the direct work with families and as fundraisers. Also, in collaboration with the University of Surrey, the team is exploring ways to identify children who are most vulnerable when a parent has a life-limiting diagnosis. These include those from one-parent families and those where there is mental illness, domestic violence or drug and alcohol misuse.

Then, there is the Think Family project. In ‘Phase One’, we are working with Frimley Park, Ashford St Peter’s and, possibly, RSCH acute trusts to raise awareness among frontline staff of the needs of children

with a family member with poor prognosis, and develop a tool to identify them early in an attempt to involve our team before things reach a crisis point.

‘Phase Two’ will aim to raise awareness in schools, by considering what staff might find difficult about supporting these children and using the same tool to bring children with particular needs to the attention of staff.

More information To contact Macmillan Family

Support, call 01342 313895 or visit www.jigsawsoutheast.org.uk

Jigsaw South East has a sister organisation, Jigsaw4u, also part- funded by Macmillan, which works with families in Sutton and Merton. To contact, call 020 8687 1384 or visit www.jigsaw4u.org.uk

References1 Akerman R and

Statham J. Childhood Bereavement: a rapid review of the literature. Childhood Wellbeing Research Centre. 2011.

Further information

Dr Paula Reed

Senior Macmillan Project Coordinator

Jigsaw South East

07786 808883

01342 313895

[email protected]

www.jigsawsoutheast. org.uk

Dr Paula Reed describes the work of a Macmillan-funded pre-bereavement service for children and young people who have a family member with a life-limiting or very serious illness

Since 2006, Jigsaw South East has been providing support and advice to children and young people who

have suffered the loss of a loved one. In April 2012, in response to enquiries about pre-bereavement support, and from young people who had been through the Jigsaw Grief Support programme, Jigsaw South East and Macmillan Cancer Support set up the Macmillan Family Support service as a two-year partnership project.

Macmillan has funded three part-time practitioners from different and complementary professional backgrounds in nursing, research, counselling, play therapy, drama therapy and early years practice.

The project aims to support children and young people aged 0–19 with a family member who has a life-limiting condition, including parents, siblings and grandparents. As it is a Macmillan-funded project, 80% of referrals are cancer related.

How the service is runThe main office is in East Grinstead, but the service covers Surrey and surrounding towns, accepting enquiries directly from people in need of support and referrals from professionals, by phone or via the website. Enquiries are logged and the details of those requesting support are emailed to the team, who work remotely

from home. New cases are allocated to team members according to existing caseloads, borough and need. For example, with a child aged 3–13 exhibiting worrying behaviour, play therapy might be best, in which case, I’d take that on. If the query was from a school about how best to support a child, any team member could take the case, depending on capacity.

Research shows that despite a significant negative impact on emotional wellbeing, not all children and families require specialist intervention. Indeed, the variable nature of life-limiting illness and the uncertainty experienced by children and families necessitate a flexible, needs-led approach to the work. Our tiered model of intervention, therefore, offers a range of responses, including approaches to whole schools, in which we help them introduce bereavement plans, talk with teachers about how to best support pupils in school, and provide information on how children may experience illness and loss in the family. More specialised interventions for some children and young people include play therapy sessions, thinking with the family

Support for children and young people

Feature Supporting young people

‘We hope to develop the role of volunteers, both in the direct work with families and as fundraisers’


Tracey Adjei

Children’s Macmillan Community Palliative Care Nurse

Hull Macmillan Children’s Palliative Care Team

tracey.adjei@ chcphull.nhs.uk

Our team cares for children, teenagers and young adults with cancer in Hull and East Yorkshire.

We received initial funding from the Big Lottery New Opportunities Fund in December 2003. Eight years on the team consists of: three children’s nurses, a play specialist, a clinical psychologist, a social worker and administration support.

Our jobs are really rewarding and we have run some fun and unique activities for the children and families in our care. Last year, with the help of charitable funds, we had the pleasure of taking 60 bereaved siblings to Hull’s aquarium, The Deep, for a sleepover. The children, aged 7–16, had a great time, painting T-shirts, badge making and enjoying other activities. They were supervised by the team and staff at the aquarium, giving their parents time to recharge.

We then let off lanterns to remember the children who had died. It was a very special time for the children, who could express themselves openly. They also had the chance to sleep with the sharks, not, to be honest, that anyone got much sleep.

Nursing careThe nursing team provides care at home in the community, helping to reduce the number of hospital admissions, allowing children and families to be at home in familiar surroundings. We liaise closely with the multidisciplinary team and perform nursing procedures, clinical interventions when necessary, symptom management, end-of-life care and bereavement support, and follow-up for family and friends.

Another unique part of our service is providing ‘quality time’ for parents, a form

of respite at home between 9am and 5pm, Monday to Friday, for up to four hours. This gives them time and peace of mind to relax, have a bath, sleep or shop, knowing that a nurse is caring for their child.

Play at homeOur play specialist facilitates play at home for the child with cancer, including activities such as art and crafts, messy play, music, singing and much more. The specialist befriends the child and family, paying attention to the child’s siblings and striving to maintain normality in sometimes challenging circumstances.

Further supportIt has been recognised in the team there is a role for clinical psychology skills in children’s palliative care, and we are presently taking advice on the management of children’s experiences and difficulties with cancer. Staff supervision and support are also available when needed. Our social worker offers practical and emotional support to children and families to help them deal with some of the stresses of everyday life when caring for a child with cancer.

The highly valued administration team is second to none. They pull together all the assessment documents, liaise with specialist professionals and always know where we all should be.

Once a year, we hold a memorial day to remember all the children we’ve helped who have died. It is well attended by families. We add a leaf for each child to our tree, with their name. End-of-life care is a small part of our work but leaves a big impact on all.

Tracey Adjei shares the innovative work of the Hull Macmillan Children’s Palliative Care Team

Caring for children

Palliative care Feature

Amber Dunlop

Senior Library Assistant, Training

The County Hospital, Wye Valley NHS Trust

01432 364427

[email protected]

More informationTo access the IPS and training options, visit www.nhs.uk/ips or visit learnzone.org.uk to access the e-learning module

Alison Stemp

Macmillan Cancer Information and Support Facilitator

The Macmillan Renton Unit, The County Hospital

01432 355444 ext 5459

[email protected]

Patients at The County Hospital in Herefordshire are benefiting from a national online tool to improve

the delivery of information to people affected by cancer.

The web-based Information Prescription Service (IPS) contains complete cancer patient information pathways, allowing information to be precisely tailored for individual patients.

The clinical library service team at The County Hospital saw in the IPS an opportunity to promote the use of a highly efficient system for streamlining the delivery of information directly to patients.

Speed and easeSince December 2011, Amber Dunlop, Senior Library Assistant (Training), has been a member of the steering group promoting awareness and supporting training on IPS implementation at The County Hospital. She has worked with Lynne Kitson, Macmillan Patient Information Manager, 3 Counties Cancer Network, and Alison Stemp, Macmillan Cancer Information and Support Facilitator and Trust Lead for IPS implementation at Wye Valley NHS Trust.

Amber received IPS training from Lynne, which allowed her to see how training is delivered by someone more familiar with the system. Amber is now one of several IPS trainers in the trust available to deliver training to hospital staff.

The original aim was to target as many members of the cancer team as possible, as quickly as possible. The intent now is to broaden the target to all relevant Wye Valley NHS Trust staff.

Training levelsThere are three levels of training:• Level 1: Awareness. For all healthcare

staff involved in the provision of information to patients.

• Level 2: Prescriber. For staff who assess and deliver cancer patient information needs. May include generating or prescribing information using the IPS. Staff at this level will have an active NHS Choices IPS account.

• Level 3: Regular prescriber/trainer. Anyone regularly involved in providing information for patients and carers.

Amber has been involved in training members of the cancer team to level 2. Everyone has reacted very positively. Amber and Alison set up a display to promote the IPS along with a selection of information materials outside the Postgraduate Medical Centre lecture theatre at the hospital. A more permanent information display has been put up on the hospital’s Research and Development board. The library team also hopes to contact GPs in the near future about training opportunities.

The origins of IPSBetween 2007 and March 2013, the National Cancer Action Team (NCAT) drove forward the implementation of cancer patient information pathways and information prescriptions for patients and carers. NCAT worked with various organisations, principally Macmillan and Cancer Research UK, to develop IPS.

Macmillan information and support staff are working to streamline the delivery of information to patients

Information prescriptions training

Feature Information and support

‘Our jobs are really rewarding and we have run some fun and unique activities for the children and families in our care’


Coming of ageFrancesca Durrell speaks with Tess Cann, a Breast Care Nurse, about a pilot project to transform cancer care for older people

In December 2012, Macmillan Cancer Support published the Cancer services coming of age report in conjunction with

the Department of Health and Age UK. The report was written as a result of learning from pilot projects across five cancer networks in England. The North East London Cancer Network was one of the pilot site areas.

Tess Cann is a Breast Care Nurse based at Homerton Hospital in north east London, and was involved in the local pilot.

The project was established as there is growing evidence to suggest that older patients are less likely to receive clinically effective treatment for their cancer. The project found, as Tess explains, that simple measures can be put into place to optimise cancer treatment for older people.

The pilot at Homerton Hospital involved breast and colorectal cancer patients aged over 70. Tess was working with the older patients who were diagnosed with breast cancer. She says:

‘I undertook a comprehensive geriatric assessment to identify any issues that may need resolving to optimise their cancer treatment. This could be a geriatric referral due to their physical health, or just arranging practical support for the patient, such as home support like general home help or gardening, and transportation that is more suitable to them.’

Many older patients experience social isolation, as they find it difficult to get out of their homes, and into the community whilst undergoing treatment. Tess found that, ‘Getting practical support to attend treatment is normally a big issue, the

hospital’s transport system isn’t always ideal and finding a transportation system that works for the patient, for example by using a taxi, can be really beneficial.’

Many older patients also have co-existing health problems. Tess explains that using a holistic approach, and doing simple assessments can help.

Tess advises other healthcare professionals: ‘Consider the involvement of geriatricians, and develop your awareness of the facilities you can signpost patients to in the community. For example, we worked closely with Age UK during our project. I learnt so much about how they help older people, and will definitely be signposting people to them in the future. It also quickly became apparent that a tailored holistic needs or comprehensive geriatric assessment are vital in providing quality care for older patients.’

This pilot has illustrated that, given the right support, cancer clinical nurse specialists can take a role in screening older patients for practical support needs and identifying issues that need specialist evaluation. Tess says, ‘The project led me to focus more on the individual needs of older patients diagnosed with breast cancer. As a consequence of how services were organised within the pilot, I was able to deliver more personalised support during their treatment more effectively and efficiently.’

You can access our Cancer services coming of age report at macmillan. org.uk/geriatriconcology

Further information

Francesca Durrell

Healthcare Project Officer

Macmillan Cancer Support

020 7840 4734

[email protected]

Caring for older people Feature

Further information

Angela O’Dell

Macmillan Colorectal Clinical Nurse Specialist

Northampton General Hospital NHS Trust

01604 523435

angela.o’[email protected]

Feature Support group

Northampton colorectal support groupAngela O’Dell describes the early development of a colorectal support group

At Northampton General Hospital NHS Trust, we see a large number of patients with colorectal cancer,

not only from Northampton, but from surrounding areas too. The clinical nurse specialists (CNSs) at the trust had come to recognise that because of the nature of colorectal cancer, many patients need support to come to terms with their diagnosis and the long-term effects of treatment. Patients would regularly tell us that they simply wanted someone with whom they could share their experience. With advances in treatment, colorectal patients are living well for longer. Many of our patients who had been through most of their treatment, and were living beyond their cancer, told us they simply wanted to help others.

The CNSs were aware, too, that there was little, if any, support beyond standard treatment follow-up, and nothing in the Northampton area that addressed survivorship needs. Over several cups of tea, the CNSs agreed that a support group was needed. We agreed to ask our patients if that’s what they wanted, and their answer was a resounding yes.

A strong turnoutWe began by agreeing on invitation criteria: patients who had completed treatment but were still receiving routine follow-up. We then sent out letters inviting patients to an inaugural meeting. We piloted the group with patients who had completed treatment,

accompanied by their carers. We were overwhelmed by the turnout to the first meeting.

We allowed time to listen to each and every patient, exploring how they felt and what they wanted from a support group. The group agreed that meetings should be open not only to patients who had completed treatment, but also to those still receiving treatment and those whose cancer cannot be cured.

The group has met three times now and continues to grow. We meet every two months except during the summer. Each meeting begins with an informative talk from an external speaker, such as a dietitian, an alternative therapist or a benefits adviser. The remaining time is devoted to open discussion.

Different skillsNorthampton has three colorectal nurse specialists, working across both the surgical and oncology pathway, ensuring that patients receive physical, psychological, emotional and practical support from a keyworker throughout their cancer experience. As a close team, we all attend the support group, each of us bringing a different set of skills. Our patients tell us that sharing their experience with others and feeling that they are not alone has made a significant difference to them.

It is still early days but we hope that the group will continue to grow and evolve.


Cancer rehabilitation Feature


The work is inspirational and a bright light of hope amidst the darkness of utter poverty and overwhelming disease. People walk great distances to be seen at Ndi Moyo and wait hours for consultations and treatment. All speak highly of the difference the centre has made to their lives.

Lucy and her husband Tony are now past retirement age and are keen to work towards making the centre sustainable and, eventually, Malawian led and funded. Much work is needed. Their dream is to use Ndi Moyo as a model to spread the philosophy of palliative care throughout the country to other rural areas.

A two-year journeyOur visit to the centre touched my husband and me deeply. It also allowed us to see how we could help drive this project forward by volunteering to work with Lucy, Tony and their staff – three nurses, one clinical officer, a number of support workers and assistants, and many volunteers – for the next two years. We were approached by another volunteering agency, Voluntary Mission Movement (VMM) as potential partner agents for this venture and have been very fortunate in gaining their support for the time we are at Ndi Moyo.

I will take on a clinical role encompassing education and research. My husband will be operations director, focusing on strategic development and

negotiating with the Malawian government for greater support and a steady supply of essential drugs and dressings.

I am very fortunate in that NHS Highland, where I have worked for 25 years, has offered me the opportunity to take sabbatical leave for this venture, allowing me to return after two years to share my learning with others.

Further information

Kathryn Hamling

Macmillan Clinical Nurse Specialist

kathryn.hamling@ hotmail.com

More information

Please visit www.ndimoyo.org and www.vmminternational.org

To donate to Kathryn and Peter’s work, visit everyclick.com/peterandkathryn

My husband Peter and I had always considered doing voluntary work overseas after we retired. He’s

a professional manager and I’ve been a Macmillan Clinical Nurse Specialist for more than 15 years. Being passionate about cancer and palliative care, I wanted to find something that would allow me to use the skills and knowledge I have developed through my work with Macmillan. I knew a little about Ndi Moyo Palliative Care Centre in Malawi through its connections with Highland Hospice in Inverness. With no other motive at the time apart from interest in what they were doing, I visited their website. Immediately a drop-down box informed me of their quest to find a volunteer operations director with palliative care experience. This I felt was a call for our combined services. My husband quickly dampened my initial excitement by pointing out we needed to work at least another two years to add to our rather meagre pensions. But, as we explored further, his interest gradually picked up and we made the decision to visit the centre in November 2012.

One of a kindMalawi is one of the poorest countries in the world. One-third of its population of 15 million people live with HIV/Aids. Many of these people are affected by cancer, particularly Kaposi’s sarcoma, and oesophageal and cervical cancer. The infant mortality rate is 120 in 1,000,

and average life expectancy is just 42. Ndi Moyo Palliative Care Centre, the only centre of its kind in the country, is set in the district of Salima. The district has a population of more than 300,000, mostly subsistence farmers with an annual income of less than £100. Hospital care is provided at the general hospital, which has no resident doctor and poorly motivated nurses. No consideration is given to palliative care.

Ndi Moyo was founded by Lucy Kishindo Finch, a Malawian nurse who trained in the UK, then worked in many parts of the world, including Uganda, where she learned about palliative care and its benefits. On returning to Malawi, she was appalled by the lack of resources and poor quality of care for the dying. She began to buy drugs to treat those in the villages around her home, initially using her own money. Her family then helped her develop the charity, Ndi Moyo UK Ltd. With this help, and additional support from Hospice Africa, the Ndi Moyo Palliative Care Centre was built. It opened its doors in 2006.

A model of careSince then, the centre has treated many hundreds of people with advanced disease using a very basic stock of core drugs – weak oral morphine solution, amitryptyline, ibuprofen, metoclopramide and steroids, as well as a growing number of home-grown herbal remedies, such as artemisia and moringa for malaria, lemongrass as a diuretic and paw paw for constipation.

Macmillan nurse Kathryn Hamling and her husband carry out a long-held desire to share their professional and palliative care expertise overseas

Voluntary care in Africa

Feature Palliative care

Ndi Moyo Palliative Care Centre building

Common types of cancer in Malawi (as a percentage of all cases)

Msyamboza KP, Dzamalala C et al. Burden of cancer in Malawi; common types, incidence and trends: National population-based cancer registry. BMC Research Notes. 2012. 5:149.

Oesophageal cancer

Kaposi’s sarcoma

Other

Cervical cancer

34.1%

12%

28.5%

25.4%

21

1 2 3 4 5

6

7

8

9 10 11

12

13 14

15 16 17

18

19

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Understanding radiotherapyMAC11640, 10th editionA booklet that explains the different types of radiotherapy. It also looks at some common issues, such as the emotional impact of radiotherapy.

Managing cancer information materialsMAC4565, 4th editionWe have revised this toolkit for cancer information and support managers. It now includes updated information about the Macmillan Quality in Information and Support Services (MQuISS) guidance and standards. To order visit be.Macmillan. You can also download an interactive PDF version from be.Macmillan or Learn Zone.

Order copies freeVisit be.macmillan.org.uk

or call 0800 500 800.

New

Resources

Answers across 3 Sable 6 General 7 Orange 8 Alien 9 Crackers 12 Spice 14 Paper 15 Sunshade 18 Scold 19 Stream 20 Oatmeal 21 Resin Answers down 1 Incision 2 France 3 Slogan 4 Black 5 Eager 6 Glasses 10 Employer 11 Strudel 13 Gammon 14 Peseta 16 Utter 17 Sheds

Be there for someone facing cancer MAC14072A short guide for anyone who’s helping a friend or relative through cancer. It gives practical tips for how readers can help and talk to their loved one, and it explains what the person with cancer may be facing at different stages of their cancer journey. It includes case studies and quotes from people who have been there.

Gardening as a way to keep active MAC14169Many people living with and beyond cancer find that gardening has physical and mental health benefits. This short leaflet, produced in partnership with the National Gardens Scheme, outlines how gardening can help, looks at how to build up your activity levels, and gives tips for gardening safely.

Updated

Help with the cost of cancerMAC4026, 11th editionOur flagship guide to benefits and financial help, updated with information about the changes the Welfare Reform Bill 2012 is gradually bringing in.

It all adds up series This series about managing your finances now includes five booklets: Financial planning (MAC14282); Managing your money day-to-day (MAC14283); Pensions (MAC12284); Insurance (MAC14285); Sorting out your affairs (MAC14286).

Managing the late effects of breast cancer treatment MAC12161, 2nd editionA guide for women who are experiencing side effects six months or later after their breast cancer treatment. It explains how these side effects can be managed.

Clues across 3 Dark brown fur of the marten6 Army commander7 Citrus fruit8 Creature from another planet 9 Christmas table-decorations

you pull 12 Nutmeg or cinnamon 14 Writing sheets 15 Parasol18 Tell off, as to a child 19 Small river20 Porridge ingredient 21 Tree sap used in plastics

Clues down 1 A surgeon’s cut2 European country3 Catchy advertising4 Colour of jet 5 Very willing 6 Raise them in a toast 10 A boss 11 A German pastry (with apple?) 13 Cured ham rashers 14 Spanish currency, pre-euro 16 Speak 17 Garden buildings

Crossword

Documents

For Macmillan professionals Issue 65 Summer 2013€¦ · up because of treatment, and travel costs could increase. That’s a massive challenge for anyone – let alone if you’re