New

Bone healthMAC12169

This booklet explains how to keep your bones healthy during and after cancer treatment, why this is important, and what factors affect bone health.

The Cancer Drugs FundMAC13305

This leaflet gives an overview of the Cancer Drugs Fund. It explains what the fund is, who can access it, how funding decisions are made and how to appeal if funding is denied.

Updated

Ask about your cancer treatmentMAC12159, 4th edition

This leaflet suggests questions that patients may want to ask their nurse or doctor at different times during their cancer treatment.

Getting the best from your cancer servicesMAC12160, 4th edition

This leaflet contains questions that patients can ask health or social care professionals at any time during their cancer experience. Each question is followed by a description of what should happen, according to official national guidelines.

It all adds up MAC11279, 2nd edition

This comprehensive guide has information about a range of

financial issues that people affected by cancer may have to cope with. There are also 10 new, stand-alone booklets based on topics covered in the larger guide.

Managing your debt: a self-help guide MAC11583, 2nd edition

This guide helps people affected by cancer understand the basics of debt management.

Travel and cancer MAC11667, 4th edition

Essential reading for people affected by cancer who want to travel.

For Macmillan professionalsWinter 2011Issue 59

Sharing good practice Vocational rehabilitation: building

work into a care plan

on familial cancer risk Julie Grier

Resources

Crossword

Clues across

1 Large self-service provisions store (11)

7 Woodwind instrument (4) 8 Ceremonial regal staff (7) 9 Musical pair (3) 10 Greenfly (5) 11 Not in attendance (6) 13 Covered with spots (6) 16 Change to fit (6) 18 Bitumen (3) 19 Gin and vermouth cocktail (7) 20 A present (4)21 Sensible and practical (4-2-5)

Answers across: 1 Supermarket 7 Oboe 8 Sceptre 9 Duo 10 Aphid 11 Absent 13 Pimply 16 Adapt 18 Tar 19 Martini 20 Gift 21 Down-to-earthAnswers down: 1 Suburb 2 Pledge 3 Resort 4 Arena 5 Ketchup 6 Tuesday 11 Alarmed 12 Sparrow 13 Petite 14 Merger 15 Loofah 17 Taint

Clues down

1 District bordering a town (6) 2 Solemn promise (6) 3 Relaxing place like the

seaside (6) 4 A stage (5) 5 Tomato sauce (7) 6 Second day of working week (7) 11 Struck with fear (7) 12 Common finch-like bird (7) 13 Small and dainty (6) 14 A joining of businesses (6) 15 Flesh brush (6) 17 Blemish or tinge (5)

1 2 3 4 5 6

7 8

9

10

11 12

13 14 15

16 17

18

19 20

21

To order copiesVisit be.macmillan.org.uk or

call 0800 500 800 to order any of these resources for free.

Special feature

Cancer and genetics

Further information

Lyn Bruce

Vocational Rehabilitation Project Manager

Macmillan Cancer Support

lbruce@macmillan. org.uk

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

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

ContributorsKaren Bailey • Lyn Bruce • Katherine Chan Alison Faulkner-Butcher • Gail Eva Anna Fletcher • Frances Goodhart • Julie Grier Richard Hunt • Linda Johnstone • Katharine McDonald • Amanda Procter • Ruth Thompson Helen Tyler • Edward Wallace Tracey Wilcocks • Wendy Wilkinson

Editorial boardCharlotte Argyle, Carers Support Manager • Kathy Blythe, Macmillan Development Manager • Colin Cosgrove, Editorial Manager • Alison Foster, Macmillan Clinical Nurse Manager & Lead Clinician for Specialist Palliative Care • Alison Hill, Nurse Director, South West London Cancer Network • Sue Hills, Professionals Engagement Manager • Beverly Hurst, Macmillan Gynaecology/Oncology CNS • Yvonne McKenna, Macmillan Lead Cancer Nurse •Barry McVeigh, Macmillan Development Manager • Eileen Mullen, User representative • Heather Nicklin, Macmillan Specialist Palliative Care Social Worker • Terry Priestman, Consultant Clinical Oncologist • Debbie Provan, Macmillan Project Lead Dietitian • Kirsty Warwick, Communications Manager • Tracy Williams, Senior Information Development Nurse

Editorial teamRosie Cotter • Genevieve Osei-Kuffuor Graham Pembrey • Sajjad Shah

Printed on recycled paper – please recycle

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

© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). MAC5772_12_11

News

4–10 The latest updates, including new professional awards and the launch of UCH Macmillan Cancer Centre

Cancer genetics special

11–15 Including breast cancer and genetics, and resources for patients and professionals

Contents Editorial

Winter 2011 Mac Voice 3

Working through cancer

A job can also restore normality, routine, stability, social contact and income. Despite these factors, the National Cancer Survivorship Initiative (NCSI) found that there was very little in the way of existing vocational rehabilitation (VR) services for people affected by cancer. VR services aim to help people with health problems stay at, return to and remain in work.

To address the gap, Macmillan launched the Vocational Rehabilitation project in December 2009. The resulting strategy proposed that a new model of VR be tested to identify best practice. Seven pilot sites were launched in April 2010 to develop and deliver VR services across England until July 2011.

The evaluation team from University College London, led by Dr Diane Playford and Dr Gail Eva, has been

gathering data on key aspects of the services and patient experience.

Three interim evaluation reports have been published, with a final report due in February 2012 (available at ncsi.org.uk). The evaluation contains health economic data so we can make a compelling case for VR in the current economic climate.

We have learned a lot about what works in VR from each of the pilot sites and have streamlined the VR model as a result. We know that there is a need for VR services and that existing services can help by being aware of the importance of work for people living with cancer.

You can read more about VR in this edition of Sharing good practice.

Lyn Bruce, Vocational Rehabilitation Project Manager

There are more than 700,000 people of working age living with a cancer diagnosis in the UK.[1] For people who have experienced ill health or disability, remaining in or returning to work can actually help promote recovery and lead to better health outcomes.[2]

Learn more about cancer in the workplaceVisit macmillan.org.uk/work for information, videos and support

2 Mac Voice Winter 2011

References1 Maddams J et al.

Cancer prevalence in the United Kingdom: estimates for 2008. British Journal of Cancer. 2009; 101: 541–547 and Cancer prevalence in the UK, 2008. http://ncin.org.uk/view.aspx?rid=70 (accessed 19 Oct 2011). This estimate is for 18–64 year olds in 2008.

2 Gordon Waddell, A Kim Burton. Is Work Good for Your Health and Wellbeing? 2006. The Stationary Office, UK.

Q&A

12–13 Julie Grier, Macmillan Genetic Counsellor, talks about supporting people with familial cancer risk

Features16 Living well with and beyond cancer17 A new independence

18–19 Thought taming

20–21 Managing symptoms at the end of life22 Prescribing processes23 Partnership working

24–25 Holistic follow-up26 Patient-centred care

Sharing good practice pull-outVocational rehabilitation: building work into a care plan

Resources

28 New and updated information from Macmillan

New awards for Macmillan professionals

In brief

Macmillan is excited to announce the launch of its new annual awards for Macmillan professionals. The Macmillan Excellence Awards will acknowledge and celebrate outstanding work by professionals that contributes to Macmillan’s key outcomes.

The awards will be made to professionals who have demonstrated a positive impact on the lives of people affected by cancer through exceptional leadership. The categories are:

Service Improvement Excellence

Innovation Excellence

Partnership Excellence

Team Working Excellence (team award).

Leadership is not dependent on seniority, role, qualification or experience – we encourage every professional to be a leader, therefore everyone has a chance to be nominated.

Excellence Award winners will be invited to a ceremony at the UK professionals’ event in November next year. Individual winners will receive a certificate and £100, and teams a plaque and £500. Up to three UK fellowships will be made from the individual award winners. Macmillan will give each fellow access to a £10,000 grant and special networking events. They will also be asked to share their expertise and leadership skills to influence Macmillan’s work.

We will also recognise the exceptional contribution that many of you make to Macmillan beyond your core professional role, such as promoting and supporting us through activities like media work, national policy development and fundraising. Nominations will be made through the same process as for the Excellence Awards. Winners will be presented with Henry Garnett certificates locally, in honour of the former chief executive who founded the first Macmillan nurses.

Nominations for the new awards will be invited from managers or peers in your own and partner organisations, and from Macmillan staff. Nominations are open until March 2012. For more information, to nominate colleagues or share this opportunity with others, visit macmillan.org.uk/learnzone

ImpactTwo new papers about the impact of lymphoedema services, and psychological and emotional support on the lives of people affected by cancer, are now available. Visit macmillan.org.uk/healthandsocialcareservices

1.6 mThe number of people living with cancer who are at increased risk of long-term health problems, or recurrence of cancer, if they don’t exercise regularly. This is according to Macmillan’s Move More report. Visit macmillan.org.uk/movemore

50%The English government will be running a public bowel cancer symptoms awareness campaign during January and February. It’s likely there will be an increase of at least 50% in urgent referrals for suspected bowel cancer during the campaign.

Cancer fearCancer is more feared than any other serious illness, according to a YouGov survey conducted for Cancer Research UK. Visit tinyurl.com/6el8mow to read more.

Winter 2011 Mac Voice 5

More information Please email Sue Hills,

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

‘These awards recognise the work, commitment and expertise of Macmillan professionals, and the impact they have on people affected by cancer’Beverly Hurst, Macmillan Gynaecology/Oncology CNS

Communication barriers are deterring deaf and hard of hearing people from accessing cancer testing. They feel isolated, confused and unnecessarily fearful, according to the charity BID Services.

Sarah Treadwell-Baker, Macmillan BID Deaf Cancer Care Coordinator, says, ‘We need doctors throughout the country to become aware of the issues facing deaf people.’

Deaf-friendly information and the provision of sign language-trained interpreters can put people with hearing impairment at ease, and help them to understand their situation when they are referred, diagnosed or treated for cancer. But these specialised services are not always immediately available.

Because of these barriers, Macmillan is funding and supporting

a new initiative by BID called the Deaf Cancer Care Programme. The programme aims to increase deaf awareness among medical professionals, particularly cancer specialists, by offering them training and guidance on how to use British Sign Language interpreters. The programme will also give specialist information, support and advice to deaf people affected by cancer.

The centre, the first of its kind in the NHS, will help people affected by cancer by delivering the best clinical treatment, well-being, rehabilitation and cancer survivorship services. This includes support from Macmillan professionals, who will work throughout the four floors of the centre alongside teams of trained volunteers.

The centre, along with the innovative services it will provide, represent Macmillan’s largest ever commitment of £10 million.

Steve Richards, Macmillan’s Director for England, says, ‘The

News

Ground-breaking cancer centre to open

4 Mac Voice Winter 2011

Improving cancer services for the hearing impaired

More information Please email Kate Monro, Project

Coordinator, UCH Macmillan Cancer Centre, at kmonro@macmillan.org.uk or visit macmillan.org.uk/cancercentre

partnership with UCLH (University College London Hospitals) will ensure patients’ needs are met holistically from the beginning, throughout and beyond their treatment.’

The building, which has been designed by award-winning Hopkins Architects, will use new technology to streamline and improve the patient experience. This includes introducing systems to help professionals plan care pathways and for all of a patient’s appointments to be booked in one go. There will also be check-in kiosks and computers for patients to access their

medical records online. Other features include two floors where Macmillan will provide holistic, practical, emotional and financial support; spaces for patients and families to relax and recuperate; a facility dedicated to the care of young people, supported by Teenage Cancer Trust; one-stop care pathways; and ambulatory care services for clinically fit patients.

The UCH Macmillan Cancer Centre in London opens in April next year

More information Sarah will be taking

referrals throughout Birmingham and surrounding areas. For more information, call 0121 246 6100.

Supporting carers is a key area of Macmillan’s work, but the organisation didn’t know how many people in the UK are caring for someone with cancer. There was also a lack of information and evidence about this group, so Macmillan commissioned Ipsos Mori to conduct a large study into carers of people with cancer.

The aim of the research was to find out how many carers of people living with cancer there are in the UK. It also gathered demographic data and explored the impact of caring on six key areas of carers’ lives: their health, finances, employment, social life/leisure, relationships and education. Finally, the research looked at the specific needs of cancer carers, to what extent these are currently being met, and what support carers would like from Macmillan.

The research found that there are 1.1 million carers of people living with cancer in the UK. The majority of these carers are female (62%) and the most common age band is 45–54. Only

48% of the carers surveyed are in employment and 79% live separately from the person they support.

Carers indicated that being a carer impacts on all areas of their lives, especially their emotional well-being and mental health (45%). Half (49%) surveyed are not receiving any support, and 70% have not had a local authority carer’s assessment.

The good news is that around a third of carers of people with cancer have already received support from Macmillan. Two-thirds (63%) would like to receive support from us, especially information and advice through our website, emotional support and support from Macmillan professionals.

The research contains further information, which you can use to improve your service and demonstrate its value to carers of people with cancer. For more information, visit macmillan.org.uk/carers

Macmillan will be using the research to inform its long-term strategy and its work to support carers.

News News

JanuaryBe Loud Be Clear 23–29 January

www.beatingbowelcancer.org

Cervical Cancer Prevention Week 22–28 January

www.jostrust.org.uk

FebruaryWorld Cancer Day 4 February

www.worldcancerday.org

International Childhood Cancer Day 15 February

www.icccpo.org

MarchOvarian Cancer Awareness Month

www.ovarian.org.uk

Prostate Cancer Awareness Month

www.prostate-cancer.org.uk

4th Biennial Late Effects in Cancer Survivors Conference, Sheffield 8–9 March

Email lateeffects@sheffield.ac.uk www.late-effects.group.shef.ac.uk

AprilVirgin London Marathon 22 April

www.macmillan.org.uk/ londonmarathon

Macmillan study sheds light on carers

Winter 2011 Mac Voice 7

Youth Cancer Trust service evaluationThe Youth Cancer Trust (YCT) has been evaluating the service it offers to teenagers and young adults (TYAs) for the past three years.

YCT provides holidays and support for TYAs (aged 14–30) with cancer from the UK and Ireland.

The aim of the independent study was to improve services and gather evidence of the effectiveness of the YCT experience on TYAs and their siblings.

Questionnaires were given to guests and families and voluntary help was provided by Social Insight Research Consultant, Tony Duckenfield.

The evaluation found that 91% of the respondents felt an increase in self-confidence following the YCT experience; 89% said they still felt the benefit up to six months

after their visit; 88% said they felt more positive about their illness from spending time with others going through a similar experience, and 84% stated they would keep in touch with those they had met. The YCT study is ongoing, with a more detailed evaluation of self-esteem among young people using the service underway.

Working with the NHS, the charity is also investing in the development of a major new social media site – realshare.co.uk – to extend ongoing relationship-building between TYAs. The site will be launched in January 2012.

Virtual learning promotes student interaction Earlier this year, an e-learning programme about the role of nutritional care in cancer was launched on Learn Zone. The project team has now developed a series of virtual classrooms that explore aspects of the programme in detail.

Virtual classroom technology means that professionals can ‘attend’ lectures, delivered by experts in the field, online. This not only saves on travel time, but allows participants to ask questions and get a deeper understanding of the topic. It also facilitates peer-assisted learning and the sharing of good practice.

Sessions were delivered between August

and November and topics included cancer rehabilitation, research reports and information and support services. For those unable to attend a live session, or those wishing to listen again, podcasts are available in the forums section at cancernursing.org and you can still ask questions through the ‘post a reply’ tab.

Further sessions may be delivered in 2012 depending on the evaluation results.

More information For more information

about YCT or the study, email admin@yct.org.uk, call 01202 763591 or visit yct.org.uk

Number of guests that felt an increase in self-confidence following the YCT experience

91%

More information Contact Debbie Provan, Macmillan Project

Lead Dietitian, at debbie.provan@aapct.scot.nhs.uk or phone 01563 575412.

Number of carers of people living with cancer in the UK

1.1m

Podcasts are available in the forums section at cancernursing.org

You can view the NCSI risk stratification model at ncsi.org.uk/risk-stratified-pathways-of-care/risk-stratification/

Macmillan’s future direction

Winter 2011 Mac Voice 98 Mac Voice Winter 2011

Ciarán highlighted problems with a disjointed cancer care system and gaps in resources and skills in the cancer workforce. Macmillan is working with partners to address these big issues, but also wants to focus on how we can help people take control of their own cancer experience.

Taking controlMacmillan professionals know that a cancer diagnosis can leave people feeling helpless, afraid, angry, and like they’re losing any sense of normality. People often tell us they want to take control of their situation but don’t always know how or where to go for support. More people would like to be equal partners in making choices about their treatment and care with professionals so they can make decisions that are right for them.

Because people are often not fully informed about the consequences of their treatment or condition, or about what they can do to regain strength and fitness, they are poorly prepared for potential pain, fatigue and other unexpected ongoing needs.

What we’re doingMacmillan is developing, piloting and rolling out tools, services and

information to help people take control of their cancer experience. These include:

• Courses for people living with cancer in programmes that will help them to manage their own condition, such as HOPE (Helping to Overcome Problems Effectively) and New Perspectives.

• Health and Wellbeing Clinics to support people at the end of treatment.

• Testing and delivering models of physical activity care.

• Providing support to employers and people with cancer to help them work through and beyond cancer (see Sharing good practice for more on this topic).

• Piloting the Macmillan organiser, which enables people to access and store personalised information about their cancer.

• Continuing to build innovative partnerships with organisations like Boots UK, which is giving people access to cancer information on the high street.

And we will make sure that information provision is a core part of cancer care, by influencing partners and working with professionals.

You can read about how Macmillan professionals are helping people self-manage on pages 16–19.

For more information, contact your Macmillan Development Manager, and look out for developments in future editions of Mac Voice.

Helping people take controlIn the summer edition of Mac Voice, Chief Executive Ciarán Devane outlined the areas of work Macmillan will be focusing on over the next 20 years

Health and Wellbeing Clinics in action

United Lincolnshire Hospitals NHS Trust was part of the Health and Wellbeing clinic pliot. It held eight clinics between April 2010 and February 2011 in a range of non-clinical settings, including a football club and country club. The clinics provided advice and information about services, including physiotherapy, occupational therapy, psychology and benefits advice, through stalls and one-to-one sessions.

The clinics initially focused on all male cancers and were then opened to men and women with any type of cancer. Patients were asked to attend the clinics after they had finished primary cancer treatment.

Over 50 patients attended the clinics and benefitted from increased awareness of treatment and support options, and increased confidence to manage pain, fatigue and emotional distress.

Feedback on the pilot indicates that the clinics reduced the number of people using hospital services, district nursing, social care, counselling and complementary therapy services because people felt able to take control of their own condition.

For more information, visit ncsi.org.uk

‘People often tell us they want to take control of their situation but don’t always know how or where to go for support’

Macmillan has developed a level 4 role called the cancer support worker. Their main purpose is to support people to self-manage their cancer by helping them navigate the health and social care system during and after cancer treatment. The role is similar to some existing support roles, but the scope of the role will vary in each setting depending on local priorities.

Changing the model of careThe role has come out of Macmillan’s work with the Department of Health and NHS Improvement on the National Cancer Survivorship Initiative (NCSI). The NCSI’s emerging aftercare model shows that needs should be assessed at key transition points, and a care plan developed to reflect one of three levels of care – supported self-management, shared care or complex care.[1] This will ensure that people are supported by the right type of professional, with the skills and knowledge to meet their needs.

Local redesignWe know that the two million people currently living with and beyond cancer will increase to four million by 2030, but doubling the workforce to match future need isn’t viable. The care pathway needs to be redesigned locally and the current workforce mapped against it. The existing workforce may need to do things differently to support this new pathway. Finally, we need to identify the remaining workforce gaps along the pathway to determine which workforce roles

best fill those gaps. Increasingly, skill mix will be taken into consideration and some posts will need to be level 4 roles on the NHS Career Framework (2009). The cancer support worker role should be seen in the context of this redesign, alongside other roles, rather than as an ‘add on’ to what already exists.

How the new role will helpThe role should free up specialists to provide their expertise to people affected by cancer and it shouldn’t be used to replace specialist posts or support cost-savings alone.

We will be piloting this role across the UK over the next two years and have developed an indicative role specification.

The core elements of the role, under the guidance and supervision of a registered practitioner, are to:

1. Coordinate care by providing a single point of access, including rapid re-entry into the system for those identified as having urgent or specialist needs.

2. Coordinate care for people with non-complex care needs (Level one – NCSI risk stratification model).

3. Coordinate education and support for people with non-complex care needs (Level one – NCSI risk stratification model).

For more information, please contact your local Macmillan Service Development Team. Contact details can be found at macmillan.org.uk/servicedevelopmentcontacts

Reference1 National Cancer

Survivorship Initiative website. Risk stratification. www.ncsi.org.uk/what-we-are-doing/risk-stratified-pathways-of-care/risk-stratification (accessed 16 September 2011).

Creating new professional roles to support the changing model of aftercare

Supported self-managementMacmillan’s future direction

News

10 Mac Voice Winter 2011

Macmillan works with over 600 partners to raise money, attract new volunteers and increase support for its services. We would not be able to achieve the level of awareness for what we do, or meet the needs of so many people living with cancer without them.

In 2011, our partnerships raised over £15 million, provided hundreds of hours worth of employee volunteering and promoted Macmillan services to thousands of employees across the UK.

Finding the right fit Our partnerships come in all shapes and sizes. They range from our local relationships with small businesses to our large national partnerships with organisations like the National Gardens Scheme (NGS). Since 1985, NGS has raised over £13 million, funding over 143 Macmillan services.

This year our partners have helped to fund over 30 Macmillan professionals, raised money for the Macmillan Support Line, enabled hundreds of thousands of pounds of worth of grants, and provided sponsorship for the World’s Biggest Coffee Morning and our centenary gala.

We’re gradually launching a range of collaborative services with some of them to bring even more support to people affected by cancer, so look out for these initiatives in your area.

Expanding our servicesIt’s now about more than cash – with partners such as Boots UK and The Royal Bank of Scotland Group (RBS), we have been able to expand our services. Our partnership with Boots UK raised £2.5 million in the first year and we’re working together to improve access to cancer information and support on the

high street. Since 2008, RBS has helped us double the size of our Welfare Rights Team. Now, with RBS’s support, we are launching a new financial guidance service for people affected by cancer.

Expert adviceOur partners also advise us on our initiatives like the work and cancer programme. We worked with partners to develop a suite of information and a toolkit to help employers and employees manage cancer in the workplace.

Getting involvedYou can support Macmillan’s work with corporate partners by, for example, signposting your patients to local services that they may benefit from, or by working with partners through your regional Macmillan office. You can find details of your local office at macmillan.org.uk/servicedevelopmentcontacts

For more information about Macmillan’s corporate partners, call the team on 020 7840 4847.

Macmillan’s corporate crewWorking with businesses to deliver more for people affected by cancer

Sea of green: Boots UK staff get behind Macmillan at their annual conference

In this section

12–13 Q&A with Julie Grier, Macmillan Genetics Counsellor

14–15 Breast cancer and genetics Karen Bailey, Macmillan Cancer Genetics Counsellor

See page 27 for a list of cancer genetics resources for professionals and people affected by cancer.

cancer genetics

sPecial

Macmillan services funded by the National Gardens Scheme

143

Macmillan corporate partners

600

Total raised by partners this year

£15 m

30 Macmillan professionals funded in 2011

geneticists, and referral guidelines were drawn up from these. If a family fulfils the guidelines for increased risk, they are referred to the service, which includes a consultant geneticist, an associate specialist, a family history coordinator, admin support and myself. There are three sites across Wales, and together, we had around 2,500 referrals in 2010.

How do you assess a family’s genetic risk?When a family is referred to us, we send out a questionnaire and then draw up a family tree. We assess the risk in the family, ranging from average risk (where the risk is the same as for the general population), moderate risk (where there is more cancer in the family than you would expect) to high risk (the 5–10% mentioned earlier). People with an average risk are invited to contact us if they have any questions or concerns, or if their family history changes.

For those assessed as having a moderately increased risk, we may, for example, suggest they have regular mammograms early or advise on the frequency of colonoscopy if there is bowel cancer in the family. People at a high risk are invited to come into the clinic and discuss what this means for them and their family.

What happens next? We may suggest screening above that offered to the moderate risk group. In some families we may also discuss the option of genetic testing. Support is open-ended for as long as the family need it.

What does genetic testing involve and what are the implications?It requires a blood sample from a relative with cancer, but in some cases that person may have died or be very

How common is a family history of cancer? People sometimes think they have an increased risk of developing cancer if there are several cases of cancer in their family. But only a small minority of breast, ovarian and bowel cancers (5–10%) are due to an inherited faulty gene. One in three people will develop cancer, so it’s going to be rare that someone doesn’t have cancer in the family.

How did the genetics counselling service in Wales start? The service was set up in 2000 with support from Macmillan. Focus groups were held with GPs, specialists and

unwell. For those in palliative care, it can be one of the last things they can do for their family. People with cancer have a lot to cope with, so it needs to be sensitively handled.

Having a genetic blood test has implications not only for the person giving the sample, but also for their relatives. Some people don’t want to know the risks while others do. We help support patients as they have these discussions with their relatives and make difficult decisions. It can cause tension, but most families pull together.

If a gene alteration is found, then a test is available for other family

members to find out whether or not they have inherited the alteration and the associated risks. A family member may find out that they haven’t inherited the gene alteration and that their risk isn’t increased. But if they do have the gene alteration, they may think about screening or surgery, for example, having a mastectomy to bring their risk down. Again, we support people making these decisions.

What are the biggest challenges? The challenge is to give people an accurate assessment and make sure they understand the possible implications and options available for them to manage their risk. We also support communication within the families that are referred to us.

What service developments have you been involved with?In 2008, we held three open days for patients across Wales, with support from Macmillan for our event in

Llandudno. From this, we established a patient panel. One of its first tasks was to look at our questionnaire and how to make it more user-friendly. We also invited interested patients to share their stories. One patient said, ‘I felt like the burden had been lifted,’ which is what we hope we can do. Sometimes it can be the first time someone has been able to talk about their worries. The stories are available at cancergeneticsstorybank.co.uk

Who inspires you?The patients facing difficult decisions are always an inspiration, as well as Dr Jonathan Gray, who was instrumental in establishing the service. I also have some contact with the fundraising team and their enthusiasm is humbling.

Name

Julie GrierMacmillan Genetic Counsellor

In post

Since 2004

Location

Betsi Cadwaladr University Health Board, Clinical Genetics, Glan Clwyd Hospital, Rhyl

Contact

01745 534447julie.grier@wales.nhs.uk

Related information Macmillan has more information

about cancer and genetics. Visit macmillan.org.uk/geneticsresources

Macmillan’s information for people worried about cancer running in their family provides reassuring advice and guidance.

Visit macmillan.org.uk/genetics to find out more.

Supporting someone with a family history of cancer?

Winter 2011 Mac Voice 1312 Mac Voice Winter 2011

cancer genetics sPeciaL

‘Having a genetic blood test has implications not only for the person giving the sample, but also for theirrelatives’

cancer genetics sPeciaL Survivorship

Many factors influence a person’s heath such as the environment, their lifestyle, hormonal factors

and, as is becoming increasingly apparent, genetic factors.[1] Discussion about genetics and cancer, particularly breast cancer, is becoming more common. Increasingly, women are questioning their diagnosis and family history, and expressing concerns about whether their cancer, or the cancers in their family, are likely to be genetic.

Predisposing genesFamilial clustering of breast cancer was recognised in ancient times. However, it wasn’t until studies were carried out in families with an excess of young, onset breast cancer and ovarian cancer, then in families with male and female breast cancers, that two major high-risk predisposing genes, BRCA1 and BRCA2, were identified in 1994–1995.[2-4] It is estimated that only 5–10% of all breast cancers are caused by an inherited mutation. BRCA1 and BRCA2 mutations are inherited in an autosomal dominant manner, which means that if a person has a mutation present in the gene, their offspring have a 50% chance of inheriting it.[5-6, 2] Women who have a mutation in either of these genes have a 50–85% lifetime risk of developing breast cancer and a 10–40% lifetime risk of developing ovarian cancer.[7] The presence of either one of these mutations also carries an increased risk of a second breast cancer.[8]

psychological burden because of their familial experiences of breast cancer and possibly high bereavement rates.[9] In addition, genetic counselling and support following the disclosure of a diagnostic or predictive result is available to help women address future concerns, ensure they receive up-to-date information to make informed choices, and continue to be medically and psychologically supported.

It’s important to remember that genetic information carries implications not just for the woman involved, but also for her family, some of whom may not want such information.

Breast cancer and geneticsMacmillan Cancer Genetics Counsellor Karen Bailey discusses the implications of the BRCA1 and BRCA2 gene mutations

Winter 2011 Mac Voice 1514 Mac Voice Winter 2011

Further information

Karen Bailey Macmillan Cancer Genetics Counsellor

Institute of Medical Genetics, UHW

029 2074 2577

www.wales.nhs.uk/awmgs

References1 Skirton H, Patch C.

Genetics for the Health Sciences: A handbook for clinical practice. 2009. 2nd Edition. Scion Publishing Ltd., Oxfordshire.

2 Haites N, Gregory H in Morrison PJ, Hodgson SV, Haites NE (Eds). Familial Breast and Ovarian Cancer: Genetics, screening and management. 2002. Cambridge University Press, Cambridge.

3 Meijers-Heijboer H. Breast cancer: Predisposing Genes and their Clinical Implications. 2002. Riddderprint offsetdrukkerij b.v., Ridderkerk.

4 Pritchard DJ, Korf BR. Medical Genetics at a Glance. 2003. Blackwell Science Ltd., Oxford.

References continued5 Claus EB, Schildkraut

JM, Thompson WD, Risch NT. The genetic attributable risk of breast and ovarian cancer. Cancer. 1996. 77; 2318–2324.

6 Blackwood MA, Webber BL. BRCA1 and BRCA2: From molecular genetics to clinical medicine. Journal of Clinical Oncology. 1998. 16; 1969–1977.

7 McGillivray BC. Management of familial breast and ovarian cancer in North America. Chapter 8b in Lalloo F, Kerr B, Friedman J, Evans G (eds) Risk Assessment and Management in Cancer Genetics. 2005. Oxford University Press, Oxford.

8 Narod SA, Offit K. Prevention and management of hereditary breast cancer. Journal of Clinical Oncology. 2005. 23; 1656–1663.

9 Lloyd S, Watson M, Waites B, Meyer L, Eeles R, Ebbs S, Tylee A. Familial breast cancer: a controlled study of risk perception, psychological morbidity and health beliefs in women attending for genetic counselling. British Journal of Cancer. 1996. 74 482–487.

Familial riskWomen who may have a higher risk of familial breast cancer include those who have a close relative diagnosed at a young age, or women with two or more close relatives on the same side of the family that have been affected. A gene mutation can also be passed down through the father’s side of the family and sometimes the medical history of both sides of the family can be significant. There are also implications for men, such as an increased risk of developing prostate cancer at a younger age and male breast cancer, particularly in the presence of a BRCA2 mutation. Other cancers are also associated with these genes.

Genetic servicesSpecialist cancer genetics services and genetic counselling provide eligible individuals with information about the chance of their cancer being hereditary, or their risk of developing cancer, based on an assessment of their family history. Specific genetic counselling can also affect the emotional adjustment of high-risk women, who often bear a great

‘A gene mutation can also be passed down through the father’s side of the family and sometimes the medical history of both sides of the family can be significant’

Related information OPERA is Macmillan’s self-assessment

tool for people worried about their risk of getting breast and/or ovarian cancer. Visit macmillan.org.uk/opera

of all breast cancers are caused by an inherited mutation

Only

5 10%

Soon after I started as a Macmillan occupational therapist (OT), I received a call from the haematology ward

sister. She asked me to help a young woman with T-cell lymphoma who was undergoing chemotherapy in preparation for a stem cell transplant. The sister felt she would benefit from some anxiety management strategies.

Emma, 31, had recently returned from Australia after her diagnosis. She told me she was feeling anxious about her treatment and that she was upset at having to change her living situation and lose her independence and autonomy.

OTs help people adjust to changing circumstances, their medical conditions and their ability to carry out everyday activities. When a person is anxious or stressed, an OT will try to use that person’s usual coping strategies to reduce the distressing feelings. For people whose coping strategies are ineffective or impractical, we offer the opportunity to learn new strategies.

Emma had always enjoyed exercise, using it to ‘let off steam’ and manage her stress. But she was so weakened by the chemotherapy that she was walking with a stick and spent much of her time resting. Helping Emma to use exercise to manage her anxiety was going to be a challenge. I also knew that she needed to be very careful of infection risk, so asking her to join a local gym wasn’t going to be the answer.

We started small – I borrowed a corner of the physiotherapy department gym and Emma started using the stationary bike for just five minutes at a time. As the weather improved, we ventured outside to the ‘green gym’. We even tried t’ai chi for balance and some boxing for upper body strength.

Emma recognised that for her to have the best chance of tolerating the transplant, she would need to be as fit as possible. She underwent the transplant 12 months ago, and despite being upset at losing some condition following the procedure, she knew that it would have been far worse had she not been as strong as she was prior to it. Following the transplant, I helped Emma to prepare for her long-term goal of running the Swansea Bay 10km in September, which we successfully ran together.

Throughout her recovery, Emma has been taking small steps to improve her life and increase her independence. When asked about the impact that occupational therapy had on her recovery, she said, ‘My recovery would have been even more challenging without Wendy being there. She was a sounding board for questions I didn’t know who else could answer.’

Occupational therapy Feature

A new independenceMacmillan Occupational Therapist Wendy Wilkinson helps a young woman achieve her rehabilitation goals

Winter 2011 Mac Voice 1716 Mac Voice Winter 2011

Feature Health and well-being

Further information

Helen Tyler

Therapies Service Manager

Velindre Cancer Centre, Cardiff

029 2061 5888, ext 6490, bleep 134

helen.tyler@wales.nhs.uk

Living well with and beyond cancerTherapies Service Manager Helen Tyler shares how volunteers are helping people self-manage their cancer

The Velindre Cancer Centre in Cardiff has successfully completed

a pilot project as one of the Health and Wellbeing Clinic test sites for the National Cancer Survivorship Initiative. Internal and external evaluation, during and at the end of the project, demonstrated significant improvement in the ability of people with cancer to self-manage their condition and the project work is now being embedded into practice.

Empowering patients, by making them more knowledgeable about their condition and how to deal with the effects of the disease and its treatment, develops their confidence. This leads to reduced anxiety and more appropriate use of services.

Health and well-being group sessions are run throughout South East Wales and are open to any person with cancer regardless of their tumour site or stage on the cancer pathway. The information patients receive is based around the eight domains of cancer rehabilitation:[1]

• physical

• nutritional

• psychological

• informational

• spiritual

• practical

• social

• financial.

The sessions are led by trained volunteers, all of whom have had a personal experience of cancer as a patient or as a carer of a person with cancer.

The sessions are free and run for around two hours at many community venues within the region. At the end of the discussion patients are invited to take part in a relaxation technique and systematic focusing session. The participants are provided with a handbook containing all the advice that has been delivered in the session, which can be used for future reference, along with a directory containing useful contacts.

Although the session is led by the volunteers, who provide advice and information on basic healthcare and well-

being, the structure of the session encourages patient participation. The interaction between patients and volunteers in a supportive environment helps patients develop the ability to self-manage their condition.

The selection and training of the volunteers, including ongoing competency checks and support, is provided by Sue Acreman, Consultant Allied Health Professional, who specialises in cancer rehabilitation and myself, an experienced physiotherapist and therapies manager.

The trained volunteers are aware of their boundaries and limitations, and can signpost the patients back to the healthcare team for more complex care if required.

Results demonstrate that 80% of those who attend the sessions are enabled to self-manage if given basic information, leaving 20% requiring rehabilitation interventions from allied health professionals, such as dietitians, physiotherapists, occupational therapists and speech and language therapists.

References1 NCCN 2002 (National

Comprehensive Cancer Network (Canada)).

‘If only I had this information and opportunity to discuss these things earlier in my cancer journey. It’s made such a difference to my ability to cope’ Small steps: Emma and Wendy work towards long-term goals

Further information

Wendy Wilkinson

Macmillan Advanced Practitioner Occupational Therapist

Singleton Hospital, Swansea

01792 285057

wendy.wilkinson@wales.nhs.uk

‘Emma was frustrated at losing her sense of normal’

‘I’m not sure I’ll ever be able to stop my first thought from being “it’s the cancer back”, but what I’ve learned through thought taming is that this doesn’t have to be my last thought!’

Tips for professionals

Flag it up As follow-up begins, acknowledge with your patient that the next phase has its challenges too.

Reassure them Worry is normal and will not make the cancer come back.

‘Hold on…’ If they are labeling themselves (‘I’m pathetic’) encourage them to question the thought trap before it takes hold, eg ‘Hold on … am I pathetic? Didn’t I just cook dinner?’

Suggest an anxiety diaryEach day they write down the incidents that made them worry. What were they doing, what did they think when the worry hit? Now try to spot ‘traps’.

Ask ‘what would you say to a friend in your situation?’ This can show us the unrealistic expectations we have for ourselves that we’d never impose on anyone else.

her thoughts. She gradually realised that many weren’t factual or fair. This was her first step towards lifting herself out of depression.

Long-term successNumerous individual studies show that CBT improves outcomes for people with post-cancer difficulties such as distress and pain,[1] insomnia[2] and fatigue.[3] A large-scale meta analysis in 2006[4] showed that CBT has a positive impact on post-cancer anxiety, depression and quality of life. Importantly, the effects are maintained at long-term follow-up.

One young lymphoma survivor, Claire, successfully used thought taming to manage her anxiety about recurrence. ‘In the first year after treatment Claire needed reassurance,

information and frequent follow-up from her clinical nurse specialist and consultant,’ says Dr Goodhart. ‘But she built up an understanding of her post-cancer body.’

Claire says, ‘When I notice a change in my body I’m not sure I’ll ever be able to stop my first thought from being “it’s the cancer back”, but what I’ve learned through thought taming is that this doesn’t have to be my last thought!’.

Thought tamingDr Frances Goodhart, Consultant Clinical Psychologist and author, explains how cognitive behaviour therapy can help people with cancer cope with their emotions after treatment

Further information

Dr Frances Goodhart

Consultant Clinical Psychologist

f_goodhart@hotmail.com

18 Mac Voice Winter 2011

Feature Survivorship

Having cancer is a bit like being in a boat when a massive storm hits,’ says Dr Goodhart, ‘Your

boat is terribly damaged, but you have a lifeboat – your cancer team. They patch you up, tow you towards shore, but then they sail away. You can see the harbour, but you can’t quite get there.’

When treatment ends, many cancer survivors expect to feel jubilation. Instead, they feel alone and afraid. ‘This is the hidden story of living beyond cancer,’ says Dr Goodhart, ‘and it can be tough.’

‘There is huge pressure to be positive after cancer and many people worry that the worry itself will make the cancer come back.’ Low mood, anger, relationship and sexual issues, self-esteem and body image concerns, sleep problems and fatigue are also very common post-cancer emotions. And it doesn’t help that loved ones, colleagues, sometimes even cancer teams, may be baffled as to why the person can’t just be happy that the cancer is gone.

Coping strategiesDr Goodhart wrote The Cancer Survivor’s Companion, which contains a range of strategies to help people living after cancer treatment feel better. ‘Thought taming’ is the foundation of these methods. It’s a key component of cognitive behaviour therapy (CBT). The central hypothesis, explains Dr Goodhart, ‘is that thoughts, feelings and behaviour are interlinked. But many thoughts are our interpretations of events, rather than facts.’

People often struggle after cancer treatment because they are caught up in unhelpful patterns of thinking, where thoughts are skewed or extreme. ‘Imagine how a person living beyond cancer must feel if they are saying to themselves “I must be positive in order to stay well”, but they have a day, week, or more when they feel anxious or low,’ Dr Goodhart explains. ‘A vicious circle of fear and depression can develop.’

Recognising negative thoughtsThought taming helps people living beyond cancer to recognise their ‘thought traps’ and examine and re-evaluate or ‘tame’ the thoughts that keep them feeling sad, worried or angry. They can then find more realistic and helpful ways of thinking such as, ‘I’m having a bad day, everyone has them; I’m not damaging my health, I’ll get through this’.

Anila, a breast cancer survivor in her 50s, was struggling with depression when Dr Goodhart saw her. ‘She began by saying, “I’m pathetic; I can’t clean the house; visitors will think I am hopeless. I’ve failed”,’ says Dr Goodhart. ‘She was treating these repetitive negative thoughts as facts, but they were her interpretation of the situation. We worked together to identify the thoughts then unpick the “traps” she was falling into.’ These thought traps included labelling herself (‘I’m pathetic’), mind reading (‘visitors will think …’) and selective thinking (‘I’ve failed’). During their sessions, Anila learned to become her own ‘thought detective’, writing down and examining

‘

Related Information Your feelings after cancer

treatment is available at be.macmillan.org.uk The Cancer Survivor’s Companion: Practical ways to cope with your feelings after cancer, 2011, by Dr Frances Goodhart and Lucy Atkins, is published by Piatkus.

References1 Tatrow K and

Montgomery G.H. Cognitive behavior therapy techniques for distress and pain in breast cancer patients: a meta-analysis. Journal of Behavioral Medicine. 2006; vol 29.

2 Savard J., Simard S, Ivers H, Morin C.M. Randomized study on the efficacy of cognitive behavior therapy for insomnia secondary to breast cancer. Journal of Clinical Oncology. 2005; vol 23.

3 Gielissen M, Verhagen C, Bleijenberg G. Cognitive behaviour therapy for fatigued cancer survivors: long term follow up. British Journal of Cancer. 2007; vol 97.

4 Osborne R.L, Demoncada A.L and Feuerstein, M. Psychosocial interventions for depression, anxiety and quality of life in cancer survivors: a meta-analysis. International Journal of Psychiatry in Medicine. 2006; vol 36.

Winter 2011 Mac Voice 19

Feature Anticipatory prescribing Anticipatory prescribing Feature

Further information

Linda Johnstone

Macmillan Area Lead Pharmacist - Palliative Care

NHS Lanarkshire

01236 772021

linda.johnstone@standrews.scot.nhs.uk

Managing symptoms at the end of life Macmillan Area Lead Pharmacist Linda Johnstone describes the implementation of Patient Group Directions and Just in Case boxes in NHS Lanarkshire

Many people nearing the end of life have a strong desire to remain in their own home for as long as

possible. Ensuring timely access to medicines can prevent unnecessary crises, such as an emergency admission to hospital, and distress for patients and their carers.

In 2007, I became involved in the development of Patient Group Directions (PGDs) for four medicines (midazolam, haloperidol, levomepromazine and hyoscine butylbromide) that are commonly required to manage symptoms at the end of life. The PGDs were approved by the primary care and therapeutics committee and put into practice in NHS Lanarkshire in 2008.

Living and dying wellThe publication of Living and Dying Well by the Scottish Government in October 2008

developed an education programme that provides staff with the clinical and pharmacological knowledge to work within the scope of each PGD, and within professional and organisational standards.

Robust systems are in place to closely monitor clinical usage and to provide an audit trail of the medicines. Audit findings have revealed that the most common reason for a medicine to be administered under a PGD is lack of anticipatory prescribing or sudden deterioration in a patient’s condition. To ensure 24-hour access to end-of-life medicines, steps must be taken to support anticipatory prescribing and have medicines available in the home before a patient enters their last days of life.

Pilot of Just in Case boxesA pilot study is currently ongoing to assess the value of placing a Just in Case box into a patient’s home a few weeks prior to their anticipated death. Medicines are prescribed for the patient by their GP ‘just in case’,

and are stored in a readily identifiable box along with needles and syringes, a sharps disposal box, and a prescription and administration record. This ensures symptoms can be managed effectively and without delay. The prescribed medicines have been aligned with the PGDs and a suitable opioid is also included for pain relief.

The boxes are being piloted in four areas across NHS Lanarkshire and have been promoted by the Macmillan GP facilitator and community Macmillan nursing team. Initial audit findings are extremely positive. There is evidence to show that the boxes have prevented calls to the out-of-hours service and avoided hospital admission. An audit form is completed for each box to evaluate the benefit to the patient against the cost of medication. Each form is assessed and will be used to build a case for area wide implementation.

Winter 2011 Mac Voice 2120 Mac Voice Winter 2011

led the local managed clinical network for palliative care to consider Just in Case boxes as a way to facilitate anticipatory prescribing and enhance patient care. Subsequently, I joined a working group that developed a policy to ensure patients within NHS Lanarkshire, who wanted to die at home, would have medicines immediately available to them.

Living and Dying Well is a national action plan that aims to improve the provision of palliative and end-of-life care across Scotland. The report outlines 24 key action points that provide a focus for NHS boards to plan and develop palliative and end-of-life care services and improve equity of access. Action 6 recommends that PGDs and Just in Case boxes are considered as a way of facilitating anticipatory prescribing and preventing unscheduled admissions to hospital. The use of PGDs in NHS Lanarkshire is highlighted as an example of good practice.

Implementation of PGDsThe PGD is a legal framework that allows out-of-hours community nurses to administer injectable medicines to alleviate the symptoms of nausea, vomiting, anxiety, terminal restlessness, respiratory secretions and confusion or agitation in patients who meet the criteria. Nurses can administer a specified amount of the medicine without the need for medical referral. This means symptoms can be managed promptly and patient/carer distress is minimised.

Macmillan professionals in NHS Lanarkshire, out-of-hours nurse coordinators and the practice development unit

A 69-year-old man with bowel cancer had expressed a wish to die at home. With the patient’s consent, a Just in Case box was placed in his home three days before his condition deteriorated. District nurses were able to effectively treat any

Definitions

A Patient Group Direction is a written instruction for the supply and/or administration of a named licensed medicine for a defined clinical condition. PGDs allow specified registered healthcare professionals to supply and/or administer a medicine directly to a patient with an identified clinical condition without them necessarily seeing a prescriber. The healthcare professional working within the PGD is responsible for assessing that the patient fits the criteria set out in the PGD. (British Medical Association).

A Just in Case Boxcontains a small supply of prescribed injectable medicines commonly required for symptom relief in the last days of life. It also includes sundries and documents to allow the medicines to be administered promptly if symptoms develop. The box is placed in the patient’s home, with their consent in case they need the medicines later on.

In practicepain and agitation by using medication from the box. The patient died comfortably at home a short time later.

The nurses remarked that having ready access to the medications meant they were able to manage his

symptoms efficiently without having to arrange a prescription and collection of the medication from the pharmacy. His family were grateful that they were able to remain with him in the last hours of his life and that his symptoms were well-controlled.

Winter 2011 Mac Voice 2322 Mac Voice Winter 2011

Feature Anticipatory prescribing

Further information

Katherine Chan

Macmillan CNS Palliative care

Hillingdon Community Health

01895 279412

k.chan1@nhs.net

Prescribing processesAn audit helps the Hillingdon Macmillan Community Palliative Care Team identify gaps and acknowledges good practice

The Hillingdon Macmillan Community Palliative Care Team (HPCT) has been using anticipatory medication

prescribing as part of its advanced care planning process since 2006.

The team carried out an audit of its process for the first time last year and results show that anticipatory medication significantly improves the chance of people dying in their preferred place of care. The audit found that over 90% of patients were able to die in their preferred place of care having had anticipatory medication prescribed, compared to 55% who didn’t.

PlanningThe team set out to identify:• the average length of time from patient

referral to the team to time of death

• the time between obtaining anticipatory medication to the death of the patient

• the current practice pattern in relation to how the anticipatory medication is organised.

The audit explored the outcome and usage of anticipatory prescribing for people in palliative care in the community over a six-month period. It also explored the correlation between the provision of anticipatory medication and preferred place of care. Finally, we compared the ordered medications with their actual use.

All patients under the team’s care during the audit period were included. The audit involved data collection by clinical nurse specialists, who completed a survey on each death/discharge of patient within their caseload for six months. One hundred and forty-one audit forms were returned representing 65% of total number of

deaths (n=218) during the audit period.

ResultsNearly 80% of patients in the audit had been prescribed anticipatory medication. The audit found that patients didn’t get the medication too early, which had previously been raised as a concern. On average, patients were given the anticipatory medication during the last 10 weeks of their lives, where symptoms would occur due to their deteriorating physical condition.

Over 70% of the anticipatory medication was organised and prescribed by primary health care team using the Gold Standard Framework (GSF). 24% was prescribed by hospital team. This figure covers patients who were discharged to a nursing home placement for end-of-life care.[1]

Morphine sulphate, cyclizine, midazolam and glycopyrronium were the most frequently prescribed medications, in line with local guidelines. Of these, midazolam was the most used drug from the medication pack, followed by morphine sulphate.

EvaluationThe audit identified good practice – the involvement of primary healthcare team using the GSF. However, it touched on safety issues, such as the need for better record keeping and multi-prescribing.

The results of the audit were presented to the end-of-life forum group and fed back to clinical governance team. Anticipatory medication documentation has since been renewed. The results will also be shared with the medicine management team to inform prescribers. It would be useful to repeat the audit in the district nursing teams in future.

Reference1 Nursing Home

Project (Hillingdon Community Health).

User involvement Feature

‘Over 90% of patients were able to die in their preferred place of care having had anticipatory medication prescribed, compared to 55% who didn’t’

Partnership working Macmillan Community Palliative Care CNS Alison Faulkner-Butcher finds working with users can be a rewarding experience

In 2009, the Hambleton and Richmondshire community specialist

palliative care team (SPCT) set out to make user involvement an integral part of improving local palliative care services.

We invited all service users and carers to comment on and discuss what the team was doing well and what improvements were needed. A series of workshops helped form a plan to improve service quality through a number of collaborative initiatives.

We set up a chaired partnership group to represent and improve the experiences of users, drawing on the support and expertise from established national user groups.

The Palliative Care Partnership group now includes nine carers; four users; Diane Clothier, a chairperson who has experience as a carer; with professional facilitation from the SPCT.

The group has achieved several service improvement measures to date, including:• developing a booklet

for users with sources of information and support

• setting up an information website about the group

• holding quarterly planning meetings

• holding local events to illustrate the impact of user involvement and to strengthen the scope and diversity of the group

• conducting a user/carer experience survey to help prioritise the group’s work

• improving out-of-hours communication

• improving advanced care planning communication.

Recently, over 100 current users were invited to attend a poster presentation of the group’s work to date. The event was well-attended and encouraged feedback and evaluation of current service provision. It has also helped the group focus on what current users needs are. The strongest themes to emerge from users were:• the need for better out-of-

hours advice and support for those in palliative care

• the need for a key worker

• improving communication between specialist departments, community services and the hospital

• more carer support

around practical caring issues and training.

Since the event, we have worked with the hospital’s fast response team (nurses, therapists and healthcare assistants) to provide an out-of-hours support service to people with palliative care needs on the team’s current case load. Forty patients and carers were assisted in the first month, and we expect many more to benefit from this initiative.

Diane Clothier says, ‘This is an excellent example of how partnership working between professionals, users and carers is helping to identify what is important to patients and carers.’

The rewards of partnership working have been rich in terms of driving quality improvement. It’s been a truly enlightening experience for all involved because of the depth and authenticity of user feedback, and the positive impact on palliative care provision locally.

Related information You can access

Macmillan’s User involvement programme at macmillan.org.uk/learnzone

Further information

Alison Faulkner-Butcher

Macmillan Community Palliative Care CNS

Old Rutson Hospital, Palliative Care South Tees Hospitals Foundation NHS Trust, Northallerton

01609 751313

alison.butcher@nyypct.nhs.uk

‘This is an excellent example of how partnership working is helpling to identify what it important to patients and carers’

Acknowlegements

Neil Bowman Gail Conlan Linda Cutter Rachel Kelly Shirley Lyon Emma Maclellan-SmithLisa Riley Dawn Stephenson Western West Yorkshire MDT

Winter 2011 Mac Voice 2524 Mac Voice Winter 2011

Feature Service improvement

A new nurse and dietetic-led service has streamlined activity and helped the team focus on patient needs

People with upper gastrointestinal (GI) cancer at Bradford Hospitals have traditionally been seen in

busy surgical and gastroenterology clinics for diagnosis and follow-up. Patients were waiting for unacceptable lengths of time and the consultation time was inadequate. The clinical nurse specialists were covering four surgical clinics, gastroenterology clinics and oncology clinics each week, and were finding it impossible to provide an equitable service for all patients. The consultations felt rushed, with little time for a holistic needs assessment.

Streamlining servicesIn August 2010, the upper GI nursing and dietetic team introduced a new follow-up service to improve this situation. As part of the new service, patients are seen in a nurse and dietetic-led clinic for diagnosis, investigation results and for follow-

up after treatment. This provides an opportunity to offer ongoing holistic needs assessment at key points along the care pathway.

The new approach has allowed the team to work as independent, autonomous practitioners, which has increased motivation and created an opportunity to extend our skill base.

Piloting new ways of workingThe majority of the multidisciplinary team responded positively to the proposal and support was gained from the team’s general manager and lead clinician. There were concerns around changing current practice, so it was agreed that the service would be piloted for six-months.

Careful assessment procedures are adhered to and patients are referred to the consultant as appropriate. Assessment tools are used as aguide for symptom management and

medical support is sought in complex or unclear circumstances. The medical team may be contacted when the nurse-led consultations take place or shortly afterwards. Therefore, support from the team has been essential. The nursing team have also trained to become non-medical prescribers to ensure a streamlined service for patients.

A protocol for requesting x-ray images was developed and the team are about to embark on IRMER (radiation protection) training to ensure there are no delays in patient care.To ensure the sustainability of the service, a competency framework for any new appointments to the nursing team was developed. The following was also needed for the proposal:

• availability of clinic rooms for two clinical nurse specialists and one specialist dietitian

• clinical support

• administrative support (existing)

• clinician time if advice is required.

Evaluating the serviceThe team evaluated the service after six months and both the patients and clinicians responded favourably. All patients (100) who had attended the clinic and the three surgical consultants were sent an evaluation questionnaire (excluding duplicates and those deceased). The patients and clinicians were asked to return the questionnaires to the clinical governance support officer who collated the results. The team received 89 responses from patients and two from clinicians, resulting in a 74% return rate.

The resultsMost patients responded favourably to the service, with only 2% preferring a consultant-led service. Neither of the two responding clinicians felt that the service needed to change and80% of respondents felt the length of their appointment was adequate.

Comparison of consultant and nurse led follow-up

FeedbackClinicians commented, ‘I think the support provided in this realm is of immense importance to the quality of care we provide to our patients,’ and, ‘The nurse and dietetic-led clinics for people with upper GI cancer have been excellent. It has freed up a lot of space in busy general clinics. It has also provided patients with a more efficient clinic focussed to their needs.’Comments from patients included:• ‘The consultant dealt with the

surgical operation while the nurse specialist dealt with aftercare and general well-being. [It was] important [the] consultant [was] involved but for a different function.’

• ‘[I] fully understand that it is not necessary to continue to see a consultant and in some respect the level of care may be considered better. A good team.’

• ‘Waiting times appear to have been cut significantly which is good.’

ConclusionHolding one follow-up clinic a week has streamlined the workload ensuring an equitable, appropriate service. It has also supported the continued professional development of the team and has led to greater productivity.

Although the cost savings for the clinician-led clinics are minimal, both patient and clinician evaluation has suggested not only acceptance of the new model, but a preference to this way of working. This has highlighted the value of the role of the clinical nurse specialist and dietetic team.

The the team will continue to provide a service responsive to the needs of the upper GI patient group.

Have you ever attended an appointment with a consultant for the same cancer diagnosis?

Yes

62%No

30%Not applicable

8%

If yes, how did your appointment with the nurse specialist compare?

About the same

78%Not applicable

11%Better

9%Worse

2%

Further information

Anna Fletcher Specialist Dietitian

Amanda Procter Lead Upper Gastrointestinal Clinical Nurse Specialist

Tracey Wilcocks Upper Gastrointestinal Clinical Nurse Specialist

amanda.procter@bthft.nhs.uk

Service improvement Feature

Holistic follow-up

cancer genetics sPeciaL

Many haematological conditions have evolved into long-term chronic illnesses. This presents

ever increasing problems both in terms of cost and capacity.

People with certain chronic haematological conditions at Belfast City Hospital were seeing the consultants at least every three months. Clinics were rushed, the time given to each patient was limited, and sessions were largely confined to addressing their pharmaceutical treatment.

Nurse-led clinicsRuth established a nurse-led clinic to provide more patient-centred and holistic care, and to encourage proactive surveillance and good health and well-being. She undertook nurse prescribing and health assessment training, and developed protocols for the clinic. She now provides nurse-led services at three clinics a week, assessing and reviewing patients who require long-term follow-up and treatment.

This initiative has resulted in better use of consultant time, which is now redirected to other clinical priorities and more complex patient needs. Other outcomes include reduced waiting times and increased continuity of care. Ruth has introduced a holistic assessment process to take in social, emotional, spiritual and financial concerns. Ongoing patient education and advice on lifestyle and coping with chronic illness have helped to promote self-management.

Telephone reviewMany of the haematological patients are elderly, frail or disabled, so Ruth established assessment protocols and criteria to identify those who may be suitable for telephone

review instead. This offers patients choice and flexibility in their care and follow-up. Around 80 patients are now reviewed in this way. This service has been well-evaluated and led to many other advantages including increased clinic capacity, decreased use of ambulances and reduced burden on families who no longer have to accompany a relative to the hospital. These comments highlight the benefits reported by patients and their carers:• ‘Travelling to Belfast was a big problem –

this service has made a real difference.’

• ‘This service is fantastic as previously getting from the hospital car park to the front door was a major operation.’

• ‘My mum can’t walk well and I work full-time so it is a relief not to have to take time off work to attend clinic with her.’

The success of the clinics has demonstrated that new models of nurse-led patient review can be both safe and also improve the patient experience.

Further improvementsRuth continues to work with the wider clinical team to look at new ways of working and improving services for other areas of practice. Current projects include the development of nurse-led venesection clinics and telephone review services for patients with other haematological disorders.

Genetics information resources

Patient-centred care Macmillan Haematology Clinical Nurse Specialist Ruth Thompson talks about the benefits of nurse-led services

Further information

Ruth Thompson

Macmillan Haematology Clinical Nurse Specialist

Haematology Department, Belfast City Hospital

07826 867197

ruth.thompson1@belfasttrust.hscni.net Macmillan Cancer Support

www.macmillan.org.uk/genetics

Macmillan has information for anybody who is worried that cancer may run in their family, and for those who have been advised to see a cancer genetics specialist or genetic counsellor.

OPERAwww.macmillan.org.uk/opera

OPERA is an online information and self-assessment tool for people concerned about their inherited risk of breast and/or ovarian cancer. It asks questions about family history and provides personalised information and support at home.

Association of Genetic Nurses and Counsellors (AGNC)www.agnc.org.uk

The AGNC represents genetic associates, nurses, counsellors and other non-medical staff working within clinical genetics. There are around 300 members within the UK.

Cancer Genetics Group (CGG)www.ukcgg.org

The CGG is a national, multidisciplinary organisation. It aims to improve the quality of care of patients and their families with any condition resulting in hereditary tumours.

Cancer Genetics StoryBankwww.cancergeneticsstorybank.co.uk

This is a collection of stories about cancer genetics. It includes stories from and about people living with the risk of cancer, compiling a family tree, telling a family member about a cancer diagnosis and making treatment decisions. It also has stories from staff at the Cancer Genetics Service for Wales.

Genetic Alliance UKwww.geneticalliance.org.uk

This national charity of partner organisations aims to improve the lives of people affected by genetic conditions. The website has general information about genetics, and genetics and cancer.

NHS Evidencewww.evidence.nhs.uk

This service gives professionals access to authoritative, clinical and non-clinical evidence and best practice through a web-based portal. To find evidence relating to cancer and genetics, type ‘cancer AND genetics’ in the search box on the homepage.

Telling Storieswww.tellingstories.nhs.uk

This resource was developed to educate all health professionals of the impact genetics has on real life, and its relevance to healthcare practice. The website draws on stories that cover a range of genetic conditions, including cancer.

26 Mac Voice Winter 2011

Feature Service improvement

Related Information Macmillan has information about

haematological cancers. You can order it at be.macmillan.org.uk call 0800 500 800, or visit macmillan.org.uk/cancerinformation