christina lilley in focus - be.macmillannicola cunningham • tracy cunningham eryl evans • tracey...

For Macmillan professionalsSpring 2012Issue 60

Prisoner healthcare

Virtual speech and language therapy

Macmillan Quality and Governance Lead for

End of Life Care

Christina Lilley

Learning and development

In focus

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

ContributorsTony Banach • Tilla Brook • Tom Cottam Nicola Cunningham • Tracy Cunningham Eryl Evans • Tracey Goldsbrough • Beverly Hurst Christina Lilley • Danielle Tanner • Jan Temenos Liliana Risi • Valerie Procter • Gill Scott Cathy Thorman • Laura Wigley • Tracy Wild

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 • Susan Llewelyn, Macmillan Information Facilitator • Yvonne McKenna, Macmillan Lead Cancer Nurse • Barry McVeigh, Macmillan Development Manager • Heather Nicklin, Macmillan Specialist Palliative Care Social Worker • Terry Priestman, Consultant Clinical Oncologist • Debbie Provan, Macmillan Project Lead Dietitian • Helen Tyler, Therapies Service 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_04_12

News

4–11 The latest from Macmillan, including award-winners, the Health and Wellbeing Clinics evaluation, and changes to the benefits system

Q&A

12–13 Christina Lilley, Macmillan Quality and Governance Lead for End of Life Care, talks about developing key care outcomes in NHS Lothian

Features14 Person-centred care15 Trialling Pandora16–17 Changing attitudes to death and dying

Contents

2 Mac Voice Spring 2012

18–19 Prisoner healthcare 20 Managing care pathways21 Virtual therapy

In focus: Learning and development22–27 Macmillan professionals share successful learning

initiatives that have improved the care they provide to people affected by cancer

Resources

28 New and updated information from Macmillan

Further information

Tony Banach

Learning and Development Manager for Macmillan professionals

Macmillan Cancer Support

[email protected]

020 7840 4692

Editorial

Spring 2012 Mac Voice 3

Professional development

Macmillan’s learning and development programme is there to help you do this. You can apply for grants to support your own learning, or to share your learning with others. In 2011, we funded 407 individuals and 65 groups. We want to fund even more in 2012.

Macmillan’s e-learning site, Learn Zone, is more popular than ever, with 45,000 unique visitors in 2011. It hosts a variety of courses, including Ashridge and Harvard management programmes, specialist skills courses, toolkits and resources. You can also find details on how to apply for a learning and development grant, and claim expenses back. To access the site, visit macmillan.org.uk/learnzone

Each nation in the UK also has its own learning and development

programmes, which provide great opportunities to network with other professionals. Contact your Macmillan development manager or learning and development team to find out more.

In this edition of Mac Voice, you can read some great examples of how Macmillan professionals across the UK are developing or implementing new learning opportunities. See pages 22–27.

Olympic athletes are training harder than ever this year so they can be at their best. Let’s make 2012 the year when we all do the same!

Tony BanachLearning and Development Manager for Macmillan professionals

With the UK economy facing global challenges, and the number of people with cancer expected to double by 2030, it’s clear that resources will be stretched. To meet these demands, we all need to learn new skills to provide the best possible services for people living with cancer

Learn, Develop, discoverWith the support of Macmillan’s free e-learning resources at macmillan.org.uk/learnzone

Macmillan has reviewed and simplified the qualifying financial criteria for its grants for people affected by cancer. The changes make it fairer for single people and smaller households, and will mean that the criteria can be applied more consistently.

Macmillan expects to help a lot more people in 2012, so there will also be a drop in the average level of help from £330 to £250. However, Macmillan aims to continue making a meaningful contribution towards helping people who are experiencing financial difficulty and unmet needs as a result of cancer, through its other financial support services.

Each week, over 600 people affected by cancer receive a Macmillan Grant. Macmillan would like to thank you for referring your patients and their family members to the service, and for making it possible to help more people than ever before.

More informationFor information and guidance

on the new criteria, and for regional contact details, visit macmillan.org.uk/grants or email the team at [email protected]

Health and Wellbeing Clinics were held at 14 pilot sites across the UK between April 2010 and April 2011.

These ‘one-stop-shops’ provided information and support to people with cancer, and their carers, to manage the transition into life after treatment. The pilot was part of the National Cancer Survivorship Initiative.

To find out how effective the clinics were, Macmillan commissioned the Office of Public Management to evaluate the services. Its final report suggests the clinics are not only good

News

Health and Wellbeing Clinics evaluation


Changes to Macmillan Grants criteria

for people affected by cancer, but for the public healthcare budget, too. It shows evidence that the clinics could relieve pressure on the NHS, by acting as an alternative to multiple follow-up appointments.

On an individual level, the clinics informed people about symptoms and treatment options, and gave them more confidence to manage their own health. Service users valued being put in direct contact with health and social care professionals, as well as other people affected by cancer.

As part of the evaluation, service users filled in questionnaires, and cost consequence studies gave an impression of financial benefits.

Macmillan is now looking to help more Trusts around the UK introduce these clinics.

Updating your stockApplication forms have been updated but older versions can be used up. To order new application forms, please email or call the team. Money Worries leaflets have been updated and are in stock, and Macmillan’s other financial resources have been updated and will be available to order shortly. Please recycle any older editions of these

Grant expenditure 2011 – percentage of total spend / (£000s)

Clothing

21% / £2.26mFuel bills

25% / £2.68mBeds, bedding

12% / £1.28mMiscellaneous

8% / £891,000

Stair lift, shower installations

4% / £408,000 Hospital fares, car expenses

10% / £1.09m Chairs

4% / £419,000 Rent and mortgage

1% / £148,000Holidays

8% / £818,000 Appliances

7% / £683,000

More information For more information and to

read the full evaluation report, visit ncsi.org.uk/what-we-are-doing/health-and-wellbeing-clinics/

products. To order the latest resources, visit be.macmillan.org.uk or call 0800 500 800.

Professional accolades

In brief

Excellence in Oncology Awards The Nottingham Macmillan Lung Cancer CARE team, which provides palliative care to people with thoracic cancer, won Oncology Team of the Year at the Excellence in Oncology Awards 2011.

Macmillan Palliative Care Consultant and Team Leader Dr Andrew Wilcox says, ‘We are delighted to have won this award. We know that the service is highly valued by patients, but it is a particular honour to receive such high recognition from our peers.’

Andrew says the team now want to look back on their experiences and learn from them. The team are also focused on securing funding, and exploring how people with other cancers may benefit from their services.

Macmillan professionals and staff were also acknowledged in other award categories. Several featured in a team that was Highly Commended in the Best Patient Support Initiative category, for creating the Treatment Summary – a standard template

to alert professionals to important information after cancer treatment.

The Best Professional Education Initiative in Oncology award went to an interactive e-learning module, created by the Royal Marsden NHS Foundation Trust and the National Macmillan Mesothelioma Resource Centre. And the Macmillan Quality Environment Mark, Macmillan’s framework for assessing cancer environments, was Highly Commended in the Best Charitable Initiative category.

Nursing Times AwardsMacmillan Advanced Nurse Practitioner Janette Murray was runner-up in the Cancer Nurse Leader of the Year category at the Nursing Times Awards 2011.Janette works at Salford Royal Foundation Trust and coordinates a service that cares for people with incurable lung cancer at home.

Coming up ...Keep an eye out for winners of the inaugural Macmillan Professionals Awards in November this year.

SurvivalPeople are living with cancer nearly six times longer than they may have done 40 years ago, according to Macmillan’s report, Living after diagnosis: median cancer survival times. The report can be downloaded at macmillan.org.uk/aboutus/mediacentre/factsandfigures.aspx

DiagnosisA report published by the Royal College of General Practitioners found that 73% of people visiting their GP with cancer symptoms were referred to a specialist after one or two consultations. The report is available at tinyurl.com/7r46chb

80%Last September, Macmillan surveyed 1,000 women across the UK to find out if they recognised the symptoms of common cancers. 80% knew the signs of breast cancer, but only 6% knew the signs of lung cancer, despite it being the UK’s biggest killer.

2014Macmillan has produced a report about the progress of the Cancer Drugs Fund in England. It urges the government to continue supporting patients who access the fund when it expires in 2014. The report can be viewed at tinyurl.com/7avugak


Oncology Team of the Year: the Nottingham Macmillan Lung Cancer CARE team

News

AprilBowel Cancer Awareness Month

www.bowelcanceruk.org.uk

Orchid Male Cancer Awareness Week 23–29 April www.orchid-cancer.org.uk

MayInternational Nurses Day 12 May

www.icn.ch

Dying Matters Week 14–20 May

www.dyingmatters.org

JuneVolunteers’ Week 1–7 June

Email [email protected] for tools, tips and guidance on celebrating volunteers, and attracting new ones

Cervical Screening Awareness Week 10–16 June

www.jotrust.co.uk

Carers Week 18–24 June

This year’s theme is ‘In sickness and in health’. For more information and to register your event, visit carersweek.org

Macmillan championsMacmillan is piloting a new, voluntary role for Macmillan professionals.

Known as Macmillan champions, these professionals will work alongside Macmillan development managers to strengthen the relationship between Macmillan and local Macmillan professionals. The ultimate goal is to improve outcomes for people affected by cancer.

Jayne Powell, Associate Lung Cancer CNS at Manor Hospital, Walsall, and Mandie Ballentine, Macmillan Colorectal CNS at Sandwell Hospital, Birmingham took on the role last year.

Jayne comments, ‘I thought it would give me the opportunity to promote awareness of the excellent support and resources provided by Macmillan. It also enables me and others to identify

professional development needs. Better engaged, educated and informed staff can only continue to improve on the care that Macmillan professionals provide to people affected by cancer.’

Mandie says, ‘I decided to take on the role of Macmillan champion primarily because I am very proud to be part of the organisation. I want to give the nurse specialists who are dealing with patients everyday more of a voice, and enable the services that Macmillan promotes to be more accessible.’

More information Contact Tudor Humphreys,

Macmillan Development Manager for central England, on 01691 650219 or email [email protected]

More information Visit tinyurl.com/ncsihna

Touch screen assessmentsTouch screen tablet PCs are being piloted to help people record how they feel and function after cancer treatment, in a new scheme by the National Cancer Survivorship Initiative.

Until now, holistic needs assessments (HNAs) have been recorded on paper. The electronic-HNA tool allows information to be stored, reviewed and updated more easily as people progress through their cancer experience. Electronic storing also makes it simpler for a patient’s notes to be shared among the wider


multidisciplinary team. It’s hoped that patients will find using the tablets more straightforward than filling in written forms.

Macmillan commissioned HealthUnlocked, an online software design company, to develop the software behind the tool, while four NHS Trusts in England were chosen as test sites (see website for details)

Testing began in February and will continue until August, with a final report due at the end of the year.

News

2011 Macmillan professionals’ event


‘The topics covered were relevant and maintained patients at the heart of the message, as well as making us feel valued. It was a very rewarding experience’

‘I came away motivated to go on and take skills and knowledge learned into practice. The networking with other professionals is always valuable’

‘This is the first event I’ve been to for some time and I thoroughly enjoyed it for the support and friendliness’

‘Once again, a brilliant event with plenty to keep us motivated – thank you Macmillan’

More information Over 250 Macmillan

professionals attended last year’s event, themed ‘The changing story of cancer: transforming services – meeting needs’. Presentations are available at macmillan.org.uk/learnzone in the Professionals section. This year’s event will be on 8 November.

News


Late last year, 277 Macmillan professionals completed a survey to help shape Macmillan’s policy and campaigns strategy. The results have given Macmillan insight into some key issues for people affected by cancer.

Key results75% of professionals surveyed felt that the coordination between health and social care services needs to be improved to overcome barriers to meeting the social care needs of people with cancer.

Over 25% shared additional comments, advice and suggestions about joined-up working, palliative care, and important issues for people

Campaign and policy survey results

Green friendly giants take to the road

affected by cancer in their local areas.95% recognised and knew about

some of Macmillan’s current campaigns, with over 80% discussing these with their patients and their families.

Moving forwardThe results of the survey are useful for several of Macmillan’s ongoing campaigns and its policy development. Macmillan will use the results to help strengthen its arguments for change, aid its policy thinking, and direct future research. For example, Macmillan is planning research this year into social care and the financial impact of cancer. The survey results will help inform these pieces of work.

Macmillan will also continue to offer more opportunities to be involved in its research, and its work to improve outcomes for people affected by cancer.

Beryl, Betty, Bertie and Dougie – buses for Macmillan Mobile Information and Support Services – are taking over the roads of England to deliver first-class information and support to people affected by cancer.

Over the last five years the mobile service has evolved from just one UK tour, to four regionally-based mobiles covering the whole of England, and an information pod called Daisy. There are also plans to extend into Wales this year.

The mobile services travel to cities, rural towns, market places, community centres and workplaces, and if there is ever a location the buses cannot go, the dedicated team of

Macmillan Mobile Information and Support Services: Bertie the bus and members of the national team

information specialists take a mobile information stand in its place, delivering talks and providing support at specialised events and venues.

Getting involvedSupport from Macmillan professionals is key to the success of the mobile services, adding local knowledge and skills to the team on board, enabling a much more relevant service.

If you are interested in joining the team for a day, or finding out when a mobile service will be near you, please visit macmillan.org.uk/mobile or email [email protected]

of professionals surveyed discuss Macmillan’s campaigns with their patients and their families

80%

More information Contact Jennifer Mitchell, Policy

Manager, on 020 7840 4962 or email [email protected]


News

Nearly half of Macmillan’s supporters get involved with us in memory of a loved one. Many people have received care and support from a Macmillan professional and would like to give something back. People like Lynn Anderson, whose husband Neville died from cancer in 2010.

‘We had help with benefit forms from a Macmillan benefits adviser and started having regular visits from our Macmillan nurse. She visited on a daily basis towards the end and gave such fantastic support to Neville and the whole family. The care and help we received allowed him to stay at home, something that meant a lot to us both.

‘My family and I decided to set up a Macmillan tribute fund for Neville, as we were so grateful for the help and support that we received during this difficult time.

‘We’ve held a whole host of events to raise money, including a coffee morning, regular bake sales, sponsored walks and even a Stars in Their Eyes themed evening. And we’ve already raised our target of £10,000.’

Paying tributeMany supporters like Lynn have told us how much fundraising for Macmillan has helped them through their loss. So, Macmillan has created a website for online tribute funds, where family and friends can create a place to remember and celebrate the life of their loved one, and keep track of the fantastic difference they’re making to the lives of people with cancer and their families. People can add their support in any way they choose, by giving donations, adding photos and messages, or fundraising for an event.

How you can helpTo find out more about creating an online tribute fund, visit macmillan.tributefunds.com or call 0300 1000 200. You can also direct family and friends to the Macmillan Support Line on 0808 808 00 00, where they can find a local support group or just have a chat. They can also share their thoughts on Macmillan’s online community at macmillan.org.uk/community

Creating a lasting memoryProject Manager Danielle Tanner explains how Macmillan is helping family and friends affected by cancer pay tribute to their loved ones

Lynn and Neville Anderson

‘Raising money for Macmillan has been a great help to me. Not only has it given me something to focus on, it has brought my friends and family closer and allowed me to enjoy myself along the way’Lynn Anderson, Macmillan supporter

Amount raised by Lynn in memory of her late husband Neville

£10,000

Campaigns


Macmillan research shows that 70% of people with cancer experience a fall in income or an increase in costs following diagnosis, while 40% of all the calls to the Macmillan Support Line are about financial concerns.

Learning how to navigate the benefits system is a necessity for many people with cancer. It’s for this reason that Macmillan took a close interest in the Welfare Reform Bill, now the Welfare Reform Act. The act will have profound implications for many people affected by cancer. These include the

impact of these changes on people affected by cancer, and to encourage the government to think again. The campaign had three priorities aimed at protecting people with cancer from some of the most worrying of the government’s proposals:

1. We called on the government to make it easier for people undergoing cancer treatment to apply for ESA. At the moment, despite being in the middle of often gruelling treatment, many people with cancer are made to attend stressful medical assessments before they can get ESA.

2. We opposed government plans to limit ESA for many sick and disabled people to 12 months. Many people with cancer, who want to return to work, need more than 12 months to do so.

3. We called on the government to scrap plans to double the waiting period, from three to six months, for PIP. Waiting six months would make an already tough situation worse.

Due to the hard work of those involved and the dedication of our supporters, including a number of Macmillan professionals, the campaign was a huge success. The cause was taken-up with zeal by MPs and Lords. Nearly 20,000 people signed our petition, while the campaign received considerable attention in local and national media. However, most importantly, the campaign led to real change. The government acknowledged the need to ensure

Putting the fair in welfarePolicy Analyst Tom Cottam on Macmillan’s campaign to ensure the benefits system works for people living with cancer

Percentage of people with cancer who experience a fall in income or an increase in costs

More information Contact Tom Cottam, Policy

Analyst, on 020 7091 2050 or email [email protected]

introduction of a single, Universal Credit to replace the current system of means-tested benefits and tax credits; a new Personal Independence Payment (PIP), which will replace Disability Living Allowance, and include a new face-to-face assessment for new and existing claimants; the limiting of contribution-based Employment and Support Allowance (ESA) to 12 months for those in the work-related activity group; and changes to the way crisis loans and community care grants are administered.

At the start of 2011, Macmillan launched a campaign to highlight the

more people undergoing cancer treatment should be able to apply for ESA without a stressful medical assessment. It also committed to protect people with cancer from the full impact of time-limiting ESA by making sure they receive the benefit earlier. Proposals to extend the waiting period to six months for DLA (PIP from 2013) were scrapped.

Building on the success of the last year, Macmillan will continue to push for changes to ensure the benefits system works for rather than

against people with cancer. However, this will only be possible with the ongoing support and knowledge of Macmillan professionals. Crucially, people affected by cancer will need the support and expertise provided by Macmillan professionals and Macmillan’s services to help them understand the impact of the changes and ensure they get financial support when they need it most.

70%40% of all calls to Macmillan are about financial concerns

££££

Macmillan’s future direction


A word from Ciaran Henderson, Patient Experience Board member

‘I’m on my third round of chemotherapy. Two weeks before my appointment, for the first time, I received a letter with the date of my appointment, an introduction as to what to expect, a welcome letter from Macmillan, and my blood form. Previously my preparation would be a short discussion with my consultant, then turning up to the hospital.

‘This is the first time ever that I was reassured that someone in chemo knows I am coming, and that my anxiety, as a patient, was being considered.

‘These small steps make the cancer journey easier.’

Patient-centred services Patient involvement is high on the agenda for many NHS Trusts, particularly after the results of the Department of Health’s National Cancer Patient Experience Survey were published in 2010

Following the survey, University College London Hospitals NHS Foundation Trust (UCLH) worked with Macmillan to build patient involvement into an integral part of its cancer service planning. This led to the creation of a Patient Experience Board to shape the services at the newly opened UCH Macmillan Cancer Centre. The board has already helped develop the interior design and IT systems.

Patient involvement The board is made up of patients in active treatment or recovery, and is chaired by Juliet Bouverie, Macmillan’s Director of Services. Juliet also brings her personal experience as a carer for her partner John.

Juliet says, ‘UCLH were keen to set up a strong process for patient involvement because although they are a leading teaching hospital, and have a world-class reputation for treatment and research, they recognised they were not always providing a service that’s patient-centred.’

Juliet adds that this disparity between excellent treatment and holistic support is something she’s experienced herself.

‘Last year, John died of a brain tumour. For five years he was treated exceptionally well at UCLH. But whenever he was discharged we felt abandoned and there was no real follow-up support.

‘We’re in a unique position, in that the board reports in at a very senior level. More than half of our members are receiving treatment, so their experiences are very relevant.’

Board prioritiesThe board has developed four priority areas where it will work with the Trust

to ensure patient experience is included:

1. Helping shape the centre’s services, design, look and feel so all are designed around the patient and provide world-class treatment, care, information and support.

2. Ensuring people with cancer are treated with dignity and respect. One of the projects related to this priority is a communication skills training course for all staff at UCLH who interact with people with cancer.

3. Making sure services are joined up so no person with cancer at UCLH falls between the gaps and returns home feeling abandoned or isolated.

4. Giving people written information at key points in their cancer journey and helping them interpret anything they don’t understand.

Benefits for other Trusts‘Our aim is to get UCLH placed in the top 25% of hospital Trusts in the 2013 patient experience survey. I believe the board’s input will be key to this,’ Juliet says.

‘Macmillan also hopes the overall partnership will help create a blueprint for other Trusts of how to develop and redesign services to improve the patient experience.’

Shaping your own servicesMacmillan can send you an overview of how the Patient Experience Board was set up, which includes useful hints and tips. Please contact Jagtar Dhanda, Inclusion Programmes Lead, on 020 7840 7847 or email [email protected]

££££

ensuring the long-term sustainability of improvements to care. This post was created to identify how this can be achieved within existing systems and resource, and to support the implementation of the resulting strategic plan.

What policies are behind the work?Living and Dying Well is the national action plan for palliative and end-of-life care in Scotland, and Living and Dying Well in Lothian is the local strategy that aims to improve systems of identification, planning and communication in palliative and end-of-life care.

What are your key relationships in this role?My role links with NHS Lothian’s Clinical Governance team, which provides specialist support around integration into organisational governance processes. It also links with the Liverpool Care Pathway (LCP) teams based in the acute and community settings. These teams are currently rolling out implementation of the LCP, an integrated plan for provision of care during the dying phase. They have a good knowledge of the LCP and an understanding of the challenges that have been faced during its implementation in different settings.

I will also work in partnership with specialist palliative care teams and the local managed clinical network for palliative care, which includes local hospices. This will ensure a consistent and coordinated approach to end-of-life care in Lothian.

What is your vision for patients? Our vision is for optimal end-of-life care for all patients, in all care settings; where patients feel comfortable and secure. This includes having their individual care needs met, as well as those of their relatives and carers.

What does your role involve?One of the main features of my role is to develop achievable key outcome measures for end-of-life care in NHS Lothian. We want these to reflect the quality and standards of care valued by patients, their families and carers, and by clinical teams. This is something that hasn’t been addressed in any great depth before in Scotland, and as such, this is quite an innovative role. I would be keen to hear from other professionals carrying out similar work.

Why was the post created?Embedding key outcome measures within NHS Lothian’s quality and governance processes is vital to

Name

Christina LilleyMacmillan Quality and Governance Lead for End of Life Care

In post

Since October 2011

Location

Western General Hospital, Edinburgh

Contact

[email protected] 0131 537 3949


What challenges do you anticipate?One of the challenges of this role will be to identify ways in which data can be captured and reported within existing systems and levels of resource. Staff throughout NHS Lothian have many competing priorities, so we’ll need to make sure that the methods of data capture are kept simple, realistic, and are well-communicated. The LCP teams have already built good relationships with a number of other teams across care settings. This will help to support our communications plan.

What type of evaluation measures will you be using?Feedback will be gathered from staff through questionnaires, focus groups and interviews. We also want feedback from relatives and carers. I’m aware of other groups and similar programmes of work both locally and in the UK already doing this, and I hope to get advice and learn from their experiences when developing our approach.

How would you like the role and service to develop?After the initial scoping period to identify meaningful data, the focus will shift to implementing data capture and reporting in practice. I will need to respond to the challenges that arise from this. I hope that along the way there will be opportunities to become involved in relevant, collaborative research projects.

What type of work were you doing prior to this role?I was a project manager for the Scottish Government’s Cancer team, where I worked on national projects

associated with radiotherapy and chemotherapy provision across the nation. Prior to this I worked on cancer audits and in research. This post pulls together elements of work I’ve done in the past.

Why did you choose to go into this area of care?I was always interested in working in healthcare. I wanted to make a difference. As work to develop outcome measures for end-of-life care is in its early stages, I saw this as an excellent opportunity to do just that, and to get involved in something that will benefit patients and their families long after the post has ended.

Who inspires you?I admire the hard work and commitment to patient care shown by healthcare staff. I hope the achievements of this post will help support them in caring for patients and their families at the end-of-life.


‘Our vision is for optimal, end-of-life care for all patients, in all care settings’

The directory is a unique source of information about booklets and leaflets for people affected by cancer. This edition has over 160 new entries

Order at be.macmillan.org.uk or view online at macmillan.org.uk/cancerpublications

The best cancer information all in one spotA directory of information materials for people affected by cancer 2011/2012 out now

Person-centred care is care that responds to, and is guided by, an individual’s preferences, needs and

values. Yet, despite being a prominent feature of national policies for several years, there remains a lack of guidance on how such care might be achieved.

In North East Yorkshire and Humber Clinical Alliance (NEYHCA), we are addressing this by using Living Well: thinking and planning about the end of your life, a booklet developed by Lancashire County Council and Helen Sanderson Associates. Living Well contains a number of person-centred ‘tools’ to help frame conversations with patients and their families. The tools prompt patients and families to consider their thoughts and feelings about what is important to them now, and what they would like in the future. The tools facilitate conversations on a variety of issues and concerns (see examples on downloadable pdf). The information is then used to shape the care and support the person receives.

Positive feedbackThe guide has been tested by a range of partners, and patients and carers. Feedback indicates that it helps both patients and professionals achieve better end-of-life care: • ‘The tools help you put things in

perspective; writing it down made it easier to share my hopes and fears with my family’ (Tony, service user).

• ‘[The tools] gave the team greater insight into who he was, what was important to him, what made him tick; things that might have otherwise taken us weeks to find out’ (Sarah, physiotherapist).

Person-centred careLaura Wigley, Macmillan Palliative and End of Life Care Programme Manager, on how the Living Well booklet is helping staff to improve care


Further information

Laura Wigley

Macmillan Palliative and End of Life Care Programme Manager

North East Yorkshire and Humber Clinical Alliance

01482 336274

[email protected]

Training and roll outAlthough the guide can be used by anyone (professional, patient, carer), NEYHCA partners are encouraged to undertake accredited training before using the tools, an approach that has been adopted elsewhere. Where direct training of staff is not possible, trained individuals support their colleagues before, during and after using the tools with patients. It is hoped that this will ensure a level of quality and consistency.

Throughout the testing process, Living Well was used by various professionals and volunteers. More recently, the tools have been used within care homes to help plan for end-of-life care, and for people with dementia to begin conversations early about what they would like to happen in the future. Elsewhere, the information gathered has been used in Gold Standard Framework meetings in GP surgeries to convey the patient’s voice and preferences.

Embedding into practiceWe are continuing to embed person-centred tools and approaches into everyday practice, by identifying opportunities for use and creating peer support networks to maintain quality.

The original team of partners that tested the guide will be reconvening to facilitate further implementation, as well as to develop a version specifically for carers. Meanwhile, work has also begun with colleagues in Scunthorpe to look at how Living Well fits into their current processes and practices to help drive up the quality of end-of-life care for all.

Feature Care standards

‘The tools help you put things in perspective; writing it down made it easier to share my hopes and fears with my family’

Download

You can download an example copy of the booklet at tinyurl.com/6pcpamu

‘Pandora is a browser-based software program that aims to capture expertise and demonstrate the complexity of the clinical nurse specialist role’


Information Technology Feature

Trialling PandoraMacmillan Gynaecology/Oncology CNS Beverly Hurst describes her experience of using the workload modelling tool

I have been asked to explain my role on many occasions, and so was

very enthusiastic when Yorkshire Cancer Network (YCN) decided to pilot Pandora across the network.

Pandora is a browser-based software program designed to capture expertise and demonstrate the complexity of the clinical nurse specialist (CNS) role.

The main aim was to show fellow professionals what the network’s CNSs did in a more measureable format.

Recording interventionsWe recorded data over a 20–30 day period. I hoped it would lead to some meaningful data on my day-to-day work, and add to my annual report.

Pandora requires the user to record details as ‘events’ and has boxes to fill in around topics such as emotional effort, research, audit, administration, clinical work, consultation and education. I found the free text boxes very useful, as sometimes the other options did not meet my needs.

We were given written instructions to follow, but after talking to colleagues, it became apparent that

subjective view that is being documented. What one CNS deems to be high level, another may think is medium or even low. This means that it’s impossible to compare with other CNS workloads.’

Colleague Marion Webb found that she had not been given enough time to view the training material. She said, ‘It became evident that the teams were collating data differently and the actual recording of events was very fragmented.’

Entering the data was time consuming, taking between 30 minutes to one hour. I always entered phone calls with a patient as a separate event, with text to give detail as some calls could be long and require a high emotional effort.

Going forwardI was enthusiastic about Pandora and still feel it has merit, particularly if more training is given. However, it has not provided any comparable data about my role, and I believe that this is due to the variations in data entry by the CNSs. We can still collate our own data, which I will use in my annual report and to prepare for peer review.

Further information

Beverly Hurst

Macmillan Gynaecology/Oncology CNS

Bradford Hospital

[email protected]

‘It became evident that the teams were collating the data differently and the actual recording of events was very fragmented’

we were all entering data differently, despite the specificity of the database. For example, when recording time spent in the outpatient clinic, I noted this as a ‘high emotional effort using clinical expertise’ with ‘consultation’ as my intervention, along with a recorded time of two hours plus. I would then add detail about the nature of consultations and specific interventions used with each patient. These included giving bad news, giving written information or specific clinical interventions. Alternatively, my colleagues were entering each patient seen in clinic separately – there seemed to be no right or wrong way.

My colleague Lynne Jackson, Macmillan Gynaecology Clinical Nurse Specialist, commented, ‘It is an individual and very

Further reading

Dr Alison Leary and Susan Oliver. Clinical nurse specialists: adding value to care. 2010. Royal College of Nursing, London. Visit tinyurl.com/rcnpandora


Feature Education

Further information

Jan Temenos

Oakhaven Schools Project Coordinator, Macmillan professional

01590 670346, ext 219

[email protected]

Acknowledgements

Thank you to Oakhaven Hospice, Macmillan, and Simon Says, a Hampshire-based child bereavement service. Special thanks to the Acorn team, staff, volunteers, teachers, children, and most importantly the carers and patients.

Changing attitudes to death and dyingBringing schools and local hospices together is helping to raise awareness of palliative care in the community – Jan Temenos, Oakhaven Schools Project Coordinator, explains

Loss and transition are part of the National Curriculum – subjects that many schools find difficult

to teach. Prompted by this need, staff at Oakhaven Hospice in Lymington explored ways of addressing such topics with schools in our catchment area.

From this, we developed the Acorn project two years ago. It aims to create links between Oakhaven hospice and local schools. The rationale, in line with the End of Life Care Strategy, is to promote a good understanding of palliative care by encouraging thought and discussion around death and dying. The project offers an opportunity for people to learn more about the hospice through the eyes of children, and gives patients and carers a space to talk about their experiences. It is inspired

by a similar model at St Christopher’s Hospice in London.

The four-week modelThe project runs one afternoon a week for four weeks. After I visit the children and parents at school, week one introduces the children to the hospice and the Oakhaven team. The children, aged between seven and 18, have a tour and do a quiz before meeting with patients and hearing their stories. Time is given to explore feelings that arise from this and ask questions. We end each session with cake, courtesy of Betty.

During the next two weeks, everyone gets to know each other while working on an art activity together. We discuss aspects of hospice life, demonstrate equipment commonly used, and the

‘I enjoyed talking to the children and becoming their friend. It brought back memories of my childhood’Patient


Education Feature

Changing attitudes to death and dying

patients show aids that they use, such as wigs and colostomy bags.During the last week we invite family members to a party where the children discuss what they have learned. They are awarded with certificates, badges and a goody bag, including information to share with parents. Parents and carers are often moved by the bonds that have formed within the group and by the ease with which difficult issues are discussed.

Bringing patients and pupils together continues to be extremely successful. It informs not only the children, but also reaches other pupils at their school, teachers, parents, and, through them, the wider community.

Evaluation and roll-outOn completion, everyone is invited to fill out simple evaluation forms that are used to develop and improve the service. Direct quotes, comments and photographs are also used to create story boards and displays for venues around the community. These have proved interesting and informative.

Feedback has always been extremely positive and we have a steady flow of patients and carers wanting to be involved. Patients approach us through their clinical nurse specialist, day hospice, inpatient unit or physiotherapy and complementary therapy outpatient services. We also occasionally attract patients who have previously been wary of the hospice, but who have heard about the project and are keen to be involved.

This year, Oakhaven has worked with nine groups of young people. We are booked up in advance, with further schools expressing a keen interest to take part. Macmillan supported my role as Oakhaven Schools Project Coordinator in 2011 to continue to develop the model and to roll it out to other hospices.

‘I learned even though people sometimes look different, they are still human beings, and it’s important not to be scared because they were lovely’Child

Expanding the projectThe approach has developed beyond the four-week model. I work closely with Personal, Health and Social Care teachers to support death education to meet syllabus requirements for GCSE, AS, A level and BTEC students.

Besides college-based lessons, the students visit the hospice to meet patient and carer groups, and receive teaching from members of the multidisciplinary team. I also visit schools, talk to assemblies and lead teaching sessions.

Sharing knowledgeI believe passionately that the hospice has an important role to play within public education and health promotion. I enjoy sharing my experiences and knowledge with others through conferences, training days, displays and word of mouth. I also work closely with the fundraising team, who report that they have seen an increase in younger volunteers and funding opportunities.

A new toolkit with templates and tips from the project will be available at macmillan.org.uk/learnzone in April.

Prisoner healthcareGill Scott, Macmillan Prison Project Lead, is working to provide good palliative and end-of-life care to inmates

Further information

Gill Scott

Macmillan Prison Project Lead for Palliative and End of Life Care

Specialist Macmillan Services

0191 5862426

[email protected]


Feature Equitable care

Two hundred people died in custody in England and Wales during 2010–11, with 61% dying from

natural causes.[1] This figure is anticipated to grow due to an ageing population and longer sentencing.

A key challenge in the prison service is to provide equitable care and ensure timely access to appropriate services, within prison regimes. Both the infrastructure of the prison and its security category have a direct impact on how healthcare can be delivered to prisoners.

The challenges of providing quality palliative and end-of-life care in a prison setting are unique. Prisons have many competing priorities, such as a population that is much more likely to be affected by mental illness, personality disorders,

learning disabilities and substance misuse than the general population. Therefore, improving palliative and end-of-life care may not be high on the agenda.In addition, the number of prisoners requiring palliative and end-of-life care is relatively small, and maintaining staff confidence and competence in caring for this group is a challenge. Some prison officers may also find working with dying prisoners challenges their role and status. The officer’s duty of care towards these prisoners may require a tailored approach, which could conflict with personal beliefs and organisational culture.

Without clear policy and guidance there is potential for inconsistent decision-making and varying standards of practice.

Reference1 Alice Fuller. No bars to

care. Inside palliative care. December 2011. Vol 18; pages 12–13.

‘The officer’s duty of care towards these prisoners may require a tailored approach, which could conflict with personal beliefs and organisational culture’

‘Those of us that did the course found it invaluable and are already using what we have learned in the environment we work in. This can only improve how we care for dying prisoners in our care, after all, that is our duty’ Prison officer after completing the palliative care course

Background to care Historically, the North Durham Macmillan and Specialist Palliative Care team has provided services across four prisons in County Durham. Since 2005, the number of patient referrals to the Macmillan team and Macmillan palliative care consultant has increased. This increasing rate of referral – 30 patients over the last five years – led to good partnership working and a professional appreciation of the difficulties of caring for a person with palliative and end-of-life care needs in custody.

During 2007, the Macmillan team tried to implement the KITE (Keep Improving the Experience) standards into the prisons. This was largely unsuccessful as the standards, which are aimed at improving cancer and palliative care in general practice, did not fit well with the prison environment.

Offender healthcare prison projectIn 2010, funding was secured from Macmillan, the North East Strategic Health Authority, and County Durham and Darlington NHS Foundation Trust, to deliver a one-year pilot project that would improve the standards of palliative and end-of-life care in the prison service. Financial support has been secured for a second year from Macmillan and the North East Offender Health Commissioning Unit, with agreement from County Durham and Darlington NHS Foundation Trust to deliver the project across the regional cluster of seven prisons.

The project team consists of a Macmillan prison project lead and a Macmillan prison practice development nurse. The team works closely with clinical palliative care prison champions, who represent each of the seven prisons, and a discipline champion in HMP Frankland.

In collaboration with prison and palliative care professionals, the team have developed a service improvement tool called the Macmillan Adopted Prison Standards (MAPS). The tool provides a prison model for palliative and end-of-life care. It consists of 28 standards and associated measures that follow the offender’s healthcare pathway from entering the prison to release, transfer or dying in prison. Development of MAPS was informed by national drivers including the End of Life Care Strategy. It was also influenced by a range of ombudsman reports and associated recommendations, which identified that communication, timely access to services and record keeping could be improved. Four of the prisons are currently working with MAPS.

Working groupsService users were also consulted in the development of MAPS through prisoner working groups in HMP Frankland. Many of the participants are serving lengthy sentences and acknowledged they will potentially require end-of-life care while in prison. Questionnaires relating to palliative and end-of-life care were also taken back to the


residential wings by the group to gain a wider understanding of concerns and suggestions for service improvement.

Key themes from the working groups and questionnaires included worries about:

• contact with family outside of prison

• having equitable access to services

• choice, eg being able to stay in their own wing of the prison

• pain management

• mental health

• spiritual care

• receiving care with dignity and compassion

• what happens after death

• access to information, eg wanting booklets that answer their questions.

Information and educationThe outcome of the working groups led to the development of patient information that addressed these concerns. Information included a leaflet about key workers and a DVD about end-of-life care in prison. The resources have also been used in educational sessions for prison officers, nursing staff and families.

The provision of education is a key strand of the project, to ensure staff are equipped with the knowledge and skills to provide quality generalist palliative and end-of-life care.

The project team work in partnership with Teesside University to deliver work-based education. To date, 25 staff, including prison officers, a chaplain and nurses have successfully completed the level four module – An introduction to Palliative Care for People with Cancer and Long-term Conditions. Three senior nurses have completed a key worker module at degree level, to support the introduction of a key worker for people in palliative care in HMP Frankland and HMP Durham.

Equitable care Feature

Feature Service improvement

Further information

Dr Liliana Risi

GP Clinical Lead Cancer and EOLC

Clinical Commissioning Group, NHS Tower Hamlets

020 7092 5217

[email protected]

Tracy Cunningham

Tower Hamlets Palliative Care Centre Manager

[email protected]

Managing care pathwaysDr Liliana Risi and Tracy Cunningham developed an award-winning end-of-life care reference guide for GPs

One evening in 2009, an experienced GP,

who had been working in Tower Hamlets for many years, had problems accessing a syringe driver and palliative care drugs. This incident resulted in a complaint. In the same month, a small group of palliative care experts wrote to the Daily Telegraph criticising the Liverpool Care Pathway (LCP), further raising anxiety among some sessional GPs.

These issues prompted the creation of a quick guide for GPs to make the LCP guidance more portable and easily-accessible. They also reinforced the need for GPs to have local, up-to-date information for home visits. It was hoped that the guide would support GPs to deliver good end-of-life care, especially for people wishing to die at home.

Another intention of developing the guide was to reach out to sessional GPs. 61% of the GPs in Tower Hamlets are in fixed-term contracts[1] and between one third and half of all GPs in

leaflet was distributed to 36 GP practices, and electronic copies were sent to a wider audience, including trainee GPs in Tower Hamlets and to key stakeholders in other parts of the country.

Liliana gave brief presentations to GPs at more than half of the practices in Tower Hamlets. Some GPs from outside the area showed an interest and it has now been adapted for GPs in Waltham Forest.

Dr Jennie Read, a GP at Limehouse Practice and Medical Director of Out of Hours Service in Tower Hamlets, says the guide, ‘is easy to accommodate’ and ‘will aid joined-up thinking and good communication between services.’

Last year, Liliana was awarded the North East London Faculty Provost General Practitioner Award for Excellence in General Practice for the guide.


London are sessional.[2] For some GPs, this may not be out of choice – in 2010, only 12 GP partnerships were advertised in the British Medical Journal, while roughly 300 new GPs qualify each year.[3] Sessional GPs can also be harder to reach and keep updated with contact information and service changes.

Liliana, GP Clinical Lead for Cancer and EOLC, and Tracy, Tower Hamlets Palliative Care Centre Manager, drafted the leaflet, with contributions from St Joseph’s Hospice. Funding came from the North East London Cancer Network. The draft was reviewed by 10 GPs, including the Tower Hamlets Medical Director. The content included actions that GPs could and should take in specific circumstances. A social enterprise called Sparrow Design designed the guide so that it could be downloaded and printed easily. Key phone numbers were included so GPs could contact necessary services while on home visits.

The first version of the

References1 Communication with

Dr Isabel Hodkinson, Co-Vice Chair of Tower Hamlets Commissioning Group. 2011.

2 The King’s Fund. Improving the quality of care in general practice. March 2011.

3 BMJ Careers. Salaried GP tutor pilot scheme by Bruna Carnevale. http://careers.bmj.com/careers/advice/view-article.html?id=20001782 (accessed 16 Jan 2012).

Related Information Sparrow Design can

adapt the quick reference guide at minimal cost. Call 020 8709 9758 or email [email protected]


Service improvement Feature

Virtual therapyMacmillan Clinical Lead Speech and Language Therapist Eryl Evans finds distance doesn’t have to be a barrier to care

The South West Wales Cancer Centre in Swansea provides

treatment for people throughout a large region. This means that many patients have to travel great distances for their diagnosis, treatment and follow-up appointments. Travelling times are long, the road infrastructure is poor and public transport is limited.

We knew that some patients weren’t able to make the journey for follow-up appointments as the distances and inconvenience of cross-country travelling were too overwhelming at a time when they were vulnerable, both physically and emotionally. Having put up with the journey for radiotherapy and surgery, facing the same journeys for regular rehabilitation was often one journey too many. Yet, the level of specialist speech and language therapy (SLT) input required for some patients was often not available locally.

Trialling new systemsIn 2008, we started offering follow-up SLT using high-quality videoconferencing equipment. This would allow patients to attend a hospital

closer to their home, and still see the specialist speech and language therapist from the cancer centre via videoconferencing facilities.

We started with one patient who was happy to volunteer. This soon became his preferred method of rehabilitation, while continuing to attend the cancer centre for medical follow-up. This meant less travelling time and expense for the family.

This form of speech and language therapy was subsequently offered to anyone living at a distance from the cancer centre, and was successfully implemented with a small but growing number of patients from 2008.

We had no technical

issues, but access to videoconferencing facilities was often a problem at the cancer centre, being part of a large hospital.

To date, there has only been positive feedback from the patients and their families – to quote our first volunteer, ‘It was just like being in the room with you – I could have said anything that I would have said face-to-face.’

Extending the serviceBecause of the success of the trials, we obtained Macmillan funding for a three-year outreach therapy project to provide a dedicated videoconferencing service to people with cancer living in rural west Wales. This project was launched in January 2012.

Further information

Eryl Evans MSc FRCSLT

Macmillan Clinical Lead Speech and Language Therapist

Singleton Hospital, ABM University Health Board, Swansea

01792 285056

[email protected]

‘It was just like being in the room with you – I could have said anything that I would have said face-to-face’

In this section

23 Shared learningValerie Proctor, Cancer Information Nurse Specialist

24–25 Developing leaders Tracey Goldsbrough, Lead Cancer Nurse, and Tilla Brook, Life coach

26 Piloting end-of-life care education Tracy Wild and Cathy Thorman, Macmillan Specialist Palliative Care Nurses

27 Applied learning Dr Nicola Cunningham, Macmillan Lecturer

LearninG development

an

d


P rofessionals working on the Macmillan Support Line, in Macmillan Mobile Information and Support Services, and

information centres, share the common need to keep up-to-date with the latest cancer research and developments.

Following some informal conversations among the group about how best to meet this need, the idea of a joint, clinical update day was explored.

We successfully applied for Macmillan funding and booked an excellent, centrally located venue, which provided all the comforts and resources we needed.

Delegates were asked what they would like included on the programme, and topics were chosen based on development needs, and questions that are commonly asked by people using the services represented. We ended up with a full day of updates on breast, haematology and prostate cancers.

We approached speakers who were known to staff or who had spoken at conferences and study days we had attended in the past. All were experts in their fields and included clinical nurse specialists from Breast Cancer Care, the Royal Marsden NHS Foundation Trust, St Bartholomew’s and the London NHS Trust, and a Macmillan information and support radiographer from University College London Hospitals. Following each session there was an opportunity for questions and discussion.

A key part of the day was to provide space and time for delegates to learn more about each others’ roles. As well as the opportunity to do this informally over coffee and lunch breaks, there was a presentation from the Macmillan Support Line nurses and a Macmillan information centre

Shared learningValerie Proctor, Cancer Information Nurse Specialist, on running a successful clinical update day

Further information

Valerie Proctor

Cancer Information Nurse Specialist

Macmillan Cancer Support

[email protected]

020 7091 2242

manager. A healthy discussion followed, with professionals sharing the opportunities and challenges of their roles.

The day was a wonderful opportunity to bring together professionals from a variety of direct and indirect services, providing a unique opportunity for networking and shared learning. These benefits were reflected in feedback from the delegates, who all evaluated the day as good or excellent.

Everyone felt the day should be repeated and plans have already begun to secure funding and a venue so that information professionals can continue to access the high-quality information they need to support them in their roles.

It is hoped that this model of shared learning can be replicated in Macmillan’s Glasgow office, where other Macmillan Support Line nurses are based.

‘Fabulous day, all speakers were excellent’

Informal learning: breaks give delegates a chance to talk about each others’ roles

Further information

Tilla Brook

Facilitator, workshop leader and qualified life coach

0113 217 5680

[email protected]

www.tillabrookcoaching.com

Tracey Goldsbrough

Lead Cancer Nurse

York Teaching Hospitals NHS Foundation Trust

01904 721120

[email protected]


How collective learning is helping clinical nurse specialists improve their confidence in the workplace

L ife as a clinical nurse specialist (CNS) can be challenging. You may not have the leadership

experience you want. You’re stuck in the middle and everyone expects something different from you. You’re trying to influence change without necessarily having power.

That was the situation Lead Cancer Nurse Tracey Goldsbrough set out to change at York Teaching Hospitals NHS Foundation Trust. Last year, Tracey approached life coach Tilla Brook to see if she could help her CNSs improve their confidence and credibility so they could drive improved care.

Some of the issues they were struggling with included:

• feeling that they weren’t being listened to and taken seriously, sometimes because of other staff making assumptions about age, gender and experience

• having such high expectations of themselves that they were unable to meet them, so were constantly struggling with self-doubt and guilt

• not feeling that it was okay to ask for help for fear of looking weak or incompetent

• feeling unable to overcome their fears so that they could take risks to drive change.

The overall impact was frustration, poor motivation and low job satisfaction. Tracey’s aim was to help them to overcome these barriers and to see themselves as leaders in their field.

Open communicationMacmillan agreed to fund a short programme of two, half-day workshops, followed by a facilitated learning set meeting where the CNSs could reflect on work issues with their peers. It was hoped that the two groups would want to continue to meet to support their collective learning.

Tilla developed a programme that offered opportunities to talk about the day-to-day realities of life as a CNS in a safe, yet challenging environment. She used a variety of interactive exercises to explore negative thoughts that stop us moving forward; unhelpful behaviour patterns; poor communication skills; and difficult relationships at work.

The groups developed a high level of trust, and individuals were open to making changes in themselves.

Each participant identified a specific challenge to overcome after the workshop. These included having tough conversations with consultants (see case study), challenging processes at multidisciplinary team meetings, renegotiating relationships with ward staff and negotiating patient expectations. The idea was to put new skills into immediate action to address something that was causing them discomfort. Each was ultimately about delivering improved patient care.

Outcomes Feedback from all the participants was very positive, despite several being apprehensive at the beginning because

Developing leaders


the programme was so different from a ‘sit and listen’ style course.

The delegates’ outcomes are best summed up in a selection of answers to the question, ‘What’s the biggest impact for you from attending the programme?’:• ‘I’m more aware of what I’m feeling.

When I’m conscious of it I can better choose what to tackle, and when’.

• ‘I realise that I can change my behaviour so I get more of the responses I want/need’.

• ‘I can now put things [that trouble me] in a box, put the lid down and get on with what’s important’.

• ‘I have the confidence to stand my ground’.

• ‘She [Tilla] left something with us that we can draw upon’.

Tracey says, ‘The course has had a profound effect on the participants. The CNSs that I manage have come

out of each session with renewed energy and a clear plan of action. I have heard several individuals, when faced with a difficult situation, asking themselves, “what would Tilla say?”. They have then used the thoughts, words or tools to look at new ways of tackling a challenge.

‘I have worked with many staff over the years in the NHS and I have never heard such a positive response to a course, nor have I witnessed participants actively utilising new tools and techniques on such a regular and practical level.

‘This has proved an excellent way of supporting a group of staff who provide a high-quality service.’

Going forwardBoth groups have agreed to maintain the self-directed learning sets, meeting every few weeks to review progress and support each other to move forward.

Case study Victoria Coates, Palliative Care Clinical Nurse Specialist

‘Part of my role involves advising medical colleagues on prescribing medications for symptom control. I have been in post for just over 18 months. Young, relatively inexperienced and advising both junior and senior doctors – oh, the fear! This has been a huge challenge for me.

‘Recently, after considering what Tilla might say, I did something that was completely out of character for me – I confronted a consultant the morning after he had been rude and dismissive. After going home and having a sleepless night feeling angry for not sticking up for myself, I decided to explain to the consultant how the situation left me feeling. Does he think I am a jumped-up nurse who doesn’t know what she’s talking about?

‘Did any of the awful things happen that were running through my head before I approached him? Quite the opposite – I was faced by a humble, embarrassed and apologetic consultant who appreciates my support and advice. “Will I avoid him in future,” he asked? Definitely not.

‘I hope that with a little insight and some tools to help manage challenging interactions I can continue to grow. I am starting to understand that I cannot always tell what people think of me without asking them.’

End of life care for all (e-ELCA) is a free e-learning package designed to increase knowledge about end-of-life

care. It’s aimed at all health and social care staff who have contact with people requiring end-of-life care.

In a large, multi-site Trust such as the Pennine Acute Hospitals NHS Trust, effective education of all staff caring for people towards the end of their lives can be difficult to achieve. So the Trust undertook a pilot study of the e-ELCA programme, involving staff with a variety of backgrounds and grades to determine whether it could be implemented effectively, and to assess the user experience.

Twenty six staff members from across the Trust, including nurses, allied health professionals and healthcare support workers, took part in the pilot. Each participant chose one module to progress as far as they could over an eight-week period from March–May 2011. A pre-pilot workshop was held to allow participants to ‘have a go’ within a supportive environment. Participants could also apply for remote access to study at home.

EvaluationParticipants were asked to complete pre and post-pilot questionnaires and attend a post-evaluation workshop. Participants returned 58% of pre-pilot and 60% of post-pilot questionnaires.

Feedback from learners who participated in the pilot evaluation was very positive, with 94% stating they would recommend e-ELCA to others, 47% stating they would definitely

continue with further study, and 27% stating they would possibly continue.

Participants felt the e-ELCA was of excellent quality and was pitched ‘at the right level’. One participant commented that it ‘met my expectations and beyond’. Although most participants completed the e-ELCA on an individual basis, 25% used a combination of individual and group study, demonstrating the flexibility of e-ELCA. Only a small number of participants (25%) were allocated study time and this impacted on the completion of modules, with many feeling unable to progress as well as they had hoped. Indeed, lack of time was identified by 75% of participants as a significant difficulty and limitation of the e-ELCA.

A launch event in June 2011 resulted in generation of plans for other teams to implement e-ELCA.

Further information

Tracy Wild and Cathy Thorman

Macmillan Specialist Palliative Care Nurses

Pennine Acute Hospitals NHS Trust, North Manchester General Hospital

0161 720 2814

[email protected] or [email protected]


References1 e-Learning for

Healthcare. End of Life Care for All. http://www.e-lfh.org.uk/projects/e-elca/index.html (accessed 16 August 2011).

2 Improving Outcomes: a strategy for cancer. 2010. Department of Health, London.

3 Cancer Reform Strategy. 2007. Department of Health, London.

4 End of Life Care Strategy – promoting high quality care for all adults at the end of life. 2008. Department of Health, London.

About e-ELCAThe programme includes four core modules (advance care planning, assessment, communication skills and symptom management) and a fifth additional module, which includes sessions on social care, bereavement, spirituality and integrating learning. It includes over 150 sessions of interactive learning and some modules are available to volunteers and administrative staff via an open-access website – endoflifecareforall.org.uk

Piloting end-of-life care education Tracy Wild and Cathy Thorman evaluate the e-ELCA programme across Pennine Acute Hospitals NHS Trust

Acknowledgements

Dr Iain Lawrie, FRCP MRCGP, Consultant and Honorary Clinical Senior Lecturer in Palliative Medicine, Pennine Acute NHS Trust


Twenty-two students are set to graduate with a Graduate Certificate in

Welfare and Benefits Advice this July. The course, which was developed by Macmillan and the School of Nursing, Midwifery and Health at the University of Stirling, aims to help professionals improve the information, advice and support they offer to people affected by cancer and long-term conditions.

Course content The course consists of three modules, delivered online, which can be completed over 18 months or as individual modules. Topics include: the importance of information and advice services; exploring the development of the welfare system; poverty, health and inequalities; work, difficulties in the workplace and workplace rehabilitation initiatives; statutory protections in place to prevent discrimination; the social security system; and current debates in relation to entitlement and provision for those experiencing disability and ill-health.

Students are encouraged to participate in online group discussions and each module includes essay

Applied learningMacmillan Lecturer Dr Nicola Cunningham shares the successes of a new course in welfare and benefits advice

Further information

Dr Nicola Cunningham

Macmillan Lecturer

School of Nursing, Midwifery and Health, University of Stirling

01786 466356

[email protected]

www.nm.stir.ac.uk/applicants-cpd/macmillan-welfare-benefits.php

writing, reflective accounts and written presentations.

The student groupStudents come from a variety of professional backgrounds across the UK, including, those in health and social care, and welfare, information and support services. Previous academic experience is not required.

Learning into practiceStudents are encouraged to use their learning at work throughout the course.

Student Gemma Thompson says the course has helped in her role as a Macmillan welfare benefits adviser.

‘As a result of what I have learned on the course, I am developing a series of training sessions to inform colleagues of the different elements of welfare reform that will impact on all of our client groups.

‘I have become more aware of individuals’ experiences of cancer and the barriers that are in place, especially with reference to social security. This has allowed me to identify certain aspects of my service that I should look at enhancing or changing.We have also started to

‘I have become more aware of individuals’ experiences of cancer and the barriers that are in place, especially with reference to social security’

look at our response time to referrals. I have developed a formula that identifies who has been contacted within our two-working-day time limit. This allows us to monitor and analyse our own success.

‘I have incorporated other changes including ensuring that my clients know that I will be their key worker. Clients are reassured when they have someone that deals with all aspects of welfare benefit advice rather than this being inappropriately fragmented over several services.

‘Our funding is coming to an end and to extend it, we have been advised that we will have to diversify. The team have had numerous meetings to discuss and develop ideas. I can genuinely report that as a result of this course, I was able to fully contribute to these discussions and come up with core ideas that were taken to our funders.’

The future The programme continues to recruit new students and the first module of the full programme begins each September, although students may also opt to do stand-alone modules.

To order free copiesVisit be.macmillan.org.uk

or call 0800 500 800.

New

Melanoma informationOur brand new series of booklets on melanoma gives comprehensive information about the disease and its treatment. The series includes: • Understanding melanoma

(MAC12174)

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Updated

Cancer Factfile 2012 CD-RomMAC13496_0112_CD

The latest factfile contains nine new fact sheets on areas such as isolated limb perfusion, mild cognitive impairment and tubular breast cancer. If you have any feedback, please email Abi Delderfield at [email protected]

Hello, and how are you?MAC5767, 4th edition

Written for carers, by carers, this handbook covers a range of subjects including employment, relationships and life after caring. It aims to strike a chord with carers

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This practical toolkit looks at the best ways to manage, update and produce information materials, including printed, audio and online.

Understanding allogenic (donor) stem cell transplantsMAC11690, 2nd edition

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Resources

Crossword

Clues across

3 Group of bananas (5) 6 Main female character

in a play (7) 7 Annoys greatly (6) 8 Below (5) 9 Work done after regular

hours (8) 12 Between (5) 14 Month and girl’s name (5) 15 Scarlet-flowered bedding plant (8) 18 Communion table (5) 19 Vertical control on ship’s

stern (6) 20 Gleeful chuckle (7)21 Bulky (5)

Answers across: 3 Bunch 6 Heroine 7 Angers 8 Under 9 Overtime 12 Inter 14 April 15 Geranium 18 Altar 19 Rudder 20 Chortle 21 LargeAnswers down: 1 Predator 2 Mirror 3 Beaker 4 Night 5 Harem 6 Housing 10 Irritate 11 Enlarge 13 Fierce 14 Amazon 16 Equal 17 Adder

Clues down

1 Carnivorous animal (8) 2 Looking-glass (6) 3 Wide-mouthed cup (6) 4 Hours of darkness (5) 5 Set of concubines (5) 6 Accommodation (7) 10 To provoke someone (8) 11 Increase in size (7) 13 Savage and ferocious (6) 14 Mythical female warrior (6) 16 Identical in size (5) 17 Viper (5)21

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christina lilley in focus - be.macmillannicola cunningham • tracy cunningham eryl evans • tracey...

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