Issuu on Google+

People Marie Curie

New look for nurses – page 18

Marie Curie Cancer Care’s newspaper for staff and volunteers

May 2013

BIG LOTTERY FUND BOOST FOR CARERS Marie Curie Cancer Care has been awarded a Big Lottery Fund grant totalling more than £404,800 over three years to provide training for carers of people with a terminal illness across Wales. Cardiff and the Vale Hospice Manager Karen Stephens said: “We are very pleased with the grant award – it will fund a good project that will make a big difference to patients and carers. “We know that carers make a big difference to patients being able to remain in their own homes, but many struggle. “We researched what is available in Wales from other organisations, and spoke to Carers Wales and Wales Carers Alliance about the issue. There is a huge gap for the kind of training that we are planning to develop with the Big Lottery funding. No-one is training carers how to look after a patient at the end of life.” As part of its background research, the charity held a workshop for carers at the Marie Curie Hospice, Cardiff and the Vale to look at what might help them. “Carers said that the difficulties they faced were a lot to do with confidence, a lot to do with knowledge, and a lot to do with not having someone in a similar situation on the other end of a phone,” Karen said. “They also mentioned the psychological aspects of caring –

for example, how do you provide care for someone who is also your husband or wife?” Now, the hospice has developed training for carers, with workshops that provide guidance and advice on caring. Topics covered are likely to include how carers can achieve stability in their caring role; the services that are available to them; the financial aspects of caring; how they can look after themselves; moving and handling; advance care planning; guardianship orders; and funerals. TRAINING “The training will incorporate details on specific illnesses i n c l u d i n g c a n c e r, e n d s t a g e dementia, Parkinson’s disease and motor neurone disease - so people know what to expect.” Karen said. “Carers will get packs to take home, as well as follow-up contacts.” The training will be available throughout Wales, and will be bilingual where appropriate. It will be run by a project manager at the Marie Curie Hospice and two senior nurses in Llanelli (West Wales) and Rhyll (North Wales). Sessions will be run as facilitated groups of 10 to 15 carers, with local experts. The project will be linked with the charity’s work with minority ethnic communities in Wales, which has also lottery-funded.

Where there’s muck, there’s money

A record number of supporters got mucky at the 2013 McVitie’s Jaffa Cakes Mud Madness, at Foymore Lodge, Portadown, County Armagh. A record 1,000 people took part in the 4.5 mile race across bogs and ponds, taking on monkey bars, cargo nets and inflatable obstacles on the way. The event is expected to raise around £11,000 for Marie Curie.

Those taking part came from across Northern Ireland and beyond – with some entrants travelling from the US and Germany. Organiser Johnny Davis said: “We are delighted to see the popularity for this event increase each year, and this year exceeded our expectations with both races selling out ahead of the day.”

Continues on page 2

Taking the plunge – see page 12

Research conference: special report – pages 9-11


2

MAY 2013

MINISTER REOPENS EDINBURGH HOSPICE

Get it write Did you know we have a house style for writing here at Marie Curie? This helps us keep all our communications consistent, so it’s important we look after it. Which is where our writing style guide comes in. It’s a mine of information about everything from common mistakes to terms that relate specifically to our charity. And it’ll help you make sure you’re always word perfect. To get your copy of our writing style guide, visit our intranet and head to the Communications section of the Document Libraries today.

Do an overseas challenge for under £100 Great news for those with itchy feet – we’re giving all staff 50% off our new range of overseas challenges. This means that for less than £100 you can bag a place on our Sahara Trek or London to Paris Cycle. Or if you fancy going even further afield, you can join in our Nepal Himalayas Trek for a bargain £125. So don’t miss out on our exclusive offer – visit mariecurie.org.uk/overseas to find your perfect challenge now.

Turn your friends into our friends Marie Curie has plenty of friends, whether that’s volunteers, MPs, celebs or supporters. But right now, we really need more of them to join our fundraising groups – which is where you can help. All we’re asking you to do is contact anyone you know who might want to become a group member and email them a link to our video: mariecurie.org.uk/groups. Hopefully, it’ll be the start of a beautiful new friendship.

Help somebody share their story Have you heard that we have a Share your story form on our main website? By filling this in, people with a connection to Marie Curie can tell us all about their experiences. Whether their loved one was cared for by our nurses or they’ve supported us in some way, their story could really help to raise awareness of our work. But first we need you to help spread the word. So please, include the link to our form – mariecurie.org.uk/mystory – in your emails this month.

Grin and bare it

Chair of Marie Curie’s Scottish Advisory Board Professor Russel Griggs OBE; Minister for Health and Wellbeing Alex Neil MSP; Bank of Scotland Foundation Trustee Paul Grice; Hospice Manager Emily Montgomery; and Chief Executive Dr Jane Collins

The Marie Curie Hospice, Edinburgh has been officially reopened by the Cabinet Minister for Health and Wellbeing after undergoing a six month refurbishment. Alex Neil, MSP marked the occasion in a ribbon cutting ceremony and was given a tour round the newly modernised facilities. He was joined by patients and their families along with Marie Curie supporters and staff. Alex Neil said: “The Scottish Government recognises the

As part of the six month programme, the hospice ward block was reconfigured to include en-suite bathrooms in each room, providing accessible washing, shower and toilet facilities for patients. Six of the multi-bed wards were also extended to provide additional space for patients and their families. The £2.6 million refurbishment was funded jointly by Marie Curie Cancer Care and private donations from supporters.

Continued from cover story

On 2 June we’re holding our very first skinny dip event in four secret locations across the UK – and we’d love you to join in. This is your chance to ditch those clothes. To lose your inhibitions. To make a difference. So sign up today at mariecurie.org.uk/skinnydip. Or if you need a bit more persuasion, check out page 3 and find out the full story now.

BIG LOTTERY FUND BOOST FOR CARERS

Marie Curie People is the charity’s official newspaper for staff and volunteers. It is published monthly.

Editor: Nick Moulton Writer: Lara Jennings Designers: Open Associates Ltd and Marie Curie Creative Services Repro by: Selsey Press Printed by: Mortons Managed & distributed by: CDL Circulation: 6,500

excellent services that Marie Curie provides for both people living with terminal illnesses and their families at what is a very difficult time. Together, we face the challenge to ensure that people receive the best possible care at the end of life, irrespective of where they choose to be cared for. I am happy to officially reopen the transformed Marie Curie Edinburgh that will allow the hospice to provide the very highest standards of care for people across Edinburgh for years to come.”

Marie Curie People needs your news. Send stories to Editor Nick Moulton, Creative Services, Marie Curie Cancer Care, 89 Albert Embankment, London, SE1 7TP. nick.moulton@mariecurie.org.uk Or phone me on 020 7599 7706 and I’ll draft a story from your call. Gerry Mahaffey

The first workshops should take place later this year. Assistant Director Carers’ Services, Patient and Family Engagement Gerry Mahaffey said: “We are really pleased about the Big Lottery Fund grant – the project to support and educate carers is breaking new ground. There is currently nothing like it for carers of people at the end of life, and it is urgently needed. “Carers have a high level of mental and physical illness, including stress, anxiety, depression, poor sleep and injuries from moving and handling. “This project will support patients’ relatives, friends and neighbours who are caring for someone at the end of life by developing and running workshops offering support, guidance and advice. “We will be working with a number of other organisations to ensure that we reach carers across

the whole of Wales. The grant application was a great piece of team work by the carers engagement team, the Welsh caring services team and the fundraising team.” Head of Statutory and Lottery Fundraising Declan Ryan said: “We are delighted with the award – competition for lottery funding has increased dramatically. We had to complete a two-stage formal application process, followed by a tough two-hour face-to-face grilling. The result is very worthwhile – with funding for an innovative and much-needed training project.” • The money was awarded as a People and Places grant.


MAY 2013

3

Rugby club dare to bare

Players from Boroughmuir Rugby Club 1st XV, Edinburgh, braved the cold and bared themselves to help Marie Curie Cancer Care launch its Skinny Dip events on 2 June. The club are devoted supporters of the charity, having donated in excess of £25,500 over the past six years. The team, led by captain Andy Rose, were delighted to bare all for Marie Curie. Recruitment for the event is going

swimmingly, according to Regional Events Manager for Scotland Isobel Paul. “We’ve already had a reasonable number of people sign up – and we expect even more to join in as the date approaches.” she said. “People are seeing the skinny dip as a celebration of life. It’s an event that anyone can do – but people definitely see it as a challenge, and not something they do every day.”

T h e s k i n n y d i p s w i l l t a ke place on beautiful beaches in the early morning. They start with registration, a warm up and briefing near the beach. Then participants will be taken to the beach, where they will strip off on the sound of a whistle, and plunge into the sea for 10 minutes. “Afterwards, everyone puts their clothes back on, and we will have hot drinks, a barbecue, entertainment

and a short talk from a Marie Curie Nurse. It’ll be really good fun,” Isobel said. Skinny dips are open to supporters aged over 18. Events are taking place at secret locations in South Wales, Dorset, East Lothian and Essex. Participants are asked to pay a £15 registration fee and attempt to raise at least £85. • For more details see mariecurie. org.uk/skinnydip

Back row: (l-r) Jackson Achilles, Graeme Blackhall, Iain Moody, Will Kay 3rd back: Redha Guedroudj, Neil Rodger, Andy Rose (captain), Jordan Edmunds 2nd back: Ross Bradford, Nick Fraser, Robby Wilson, Mike Brown 1st row: Matt Walker, Damian Hoyland, Jonny Latta In front: Rob Cairns


4

MAY 2013

Big change for IT support

The team at Specialist Computer Centre

Chief Executive Dr Jane Collins writes: Marie Curie has held or hosted, with other organisations, two excellent conferences recently, and you will be able to read more about them in this edition of Marie Curie People (see pages 7 and 9-11). The first had the title Palliative and end of life care for all – is everybody equal? and the second Delivering inclusive end of life care services that meet the expectations, preferences and needs of people from BAME backgrounds. Both were really interesting and, for me at least, challenging because of the issues they raised. At Marie Curie we are committed to providing the best care possible for patients at the end of their lives, regardless of their background, be it in terms of race, religion, sexual preferences or any other difference in their lives. Each patient is an individual. The question raised in my mind attending both conferences is whether, although we say we care for the person as an individual, do we really provide care in a way that they want? People are so different, which means they have different needs and expectations informed by their past experiences of society and health care among other influences. Do we take these into account? Dr Jonathan Koffman from

King’s College University, London gave some examples. How do clinical teams have discussions about there being no further options for cure and that palliative care is the only option to manage symptoms? For patients who have lived in countries where access to healthcare is dependent on being able to pay, any discussion about stopping curative treatment may be seen as rationing or denying them something other people in the UK might receive. Do they trust the clinical team to be acting in their best interests? In Western European medicine we assume that the patient has considerable autonomy in decision making, emphasised by talking to the patient rather than involving the family. In some cultures the

family and community play a much larger part in decisionmaking. Assumptions can also be made by us about family structure and who patients want to have with them at the end of life. For some individuals their partner of the same sex and friends may be more important and, in reality, be that person’s family, rather than birth relatives. It may seem very challenging to get this right, to make sure everybody has access to the care they need in the way they want. But it seems to be easier than it might look. As Jonathan said we should just ask them how they want us to provide care and who to involve rather than make assumptions.

Marie Curie Cancer Care has moved its IT managed service from Calyx Managed Services to new partner Specialist Computer Centre (SCC). SCC is now running the charity’s IT Service Desk (formerly known as the IT Help Desk) along with other infrastructure support and professional services. The transfer took place over Easter weekend and went well with no issues during transition. The supplier selection and service transition was managed by Project Manager Janette Hellyer who worked with IT Account Manager Andy Hart throughout the Easter weekend to ensure that any IT users experiencing challenges could contact them for support as the service transitioned. “While the IT service desk has moved from Manchester to Birmingham, where SCC are based, users should not have experienced any disruption – it went very smoothly,” Andy said. “Marie Curie is a growing organisation and as a result we are becoming more dependent on IT. We needed a company that could evolve with us. SCC is a bigger company with a much wider resource pool, and we believe they will offer us better value for money. “ We h a v e i n t r o d u c e d m o r e challenging service levels for responding to requests and resolving incidents. We expect more incidents to be resolved at the first point of contact with the IT service desk, and fewer passed on to other IT resolving

teams which will speed up the whole experience for the caller. “Transition to SCC is a three-stage process and completing the transfer was the first stage; the second is to stabilise the service and get it bedded in – that’s well underway; the third will be an on-going improvement of IT services. “SCC will introduce better efficiencies; and offer a wider technology scope and the prospect of better ways of working. Their green credentials are first rate – they recycle everything from old IT equipment to packaging in their purpose built recycling plant.” The move follows a 10-month formal tender process and service transition preparation and planning. SCC won the contract on a competitive basis, against eight other companies. SCC has retained several former Calyx colleagues at 89 Albert E m b a n k m e n t , Po n t y p o o l a n d Swindon.

IT Service Desk The IT Service Desk can be contacted by telephone on 0845 634 2558 or by email at itservicedesk@mariecurie.org.uk The support desk operates 24-hours a day, seven days a week including public holidays. If you wish to give any feedback on your experiences with our new partner, please feel free to contact Andy Hart on andy.hart@mariecurie.org.uk

Update for nosmoking policy Marie Curie Cancer Care has updated its no-smoking policy for Marie Curie Hospices. The new policy allows hospices more local flexibility about how they implement guidance for patients and visitors. It recognises that due to the nature of the hospice environment some patients and their visitors may wish to smoke, and the charity will try to enable this where possible and reasonable. Patients and visitors who want to smoke will be directed to a shelter in the hospice grounds. Project Manager, Future Marie Curie Nursing Service John Carrion, was project manager for the group that drew up the policy. He said: “The new policy formally permits

hospice patients and their visitors to smoke in a designated place in the grounds, as long as it doesn’t discomfort others. “We do understand that this is a difficult time for patients and visitors, and some people will wish to smoke. At the same time, we have a responsibility to staff, volunteers and other patients and visitors.” • All Marie Curie buildings and vehicles are no-smoking environments. Staff and volunteers are banned from smoking at any time when on duty, in uniform or wearing identifiable Marie Curie emblems, or directly outside Marie Curie buildings or on charity business.


MAY 2013

5

EDF ENERGY ANNOUNCES CHARITY PARTNERSHIP Marie Curie Cancer Care and energy company EDF Energy are launching a three-year corporate partnership on 1 May. EDF Energy aims to raise £600,000 for Marie Curie during the relationship, with the company matchfunding its employees’ fundraising by up to £100,000 each year. Marie Curie was selected as EDF Energy’s charity partner by an employee vote, with more than 7,000 members of staff taking part. The charity put across its case for support in a short video featuring Marie Curie Nurse Lorna Clarkson, which was developed by the in-house creative team. Head of Corporate Fundraising Arun Sharma said: “We are absolutely delighted. The EDF Energy partnership has huge potential to benefit Marie Curie. A great deal of work has been put in by the whole charity to become EDF Energy’s charity partner. We demonstrated our commitment, our passion and most importantly,

our ability to come together as an organisation. EDF Energy are really enthusiastic about Marie Curie Cancer Care, and we are really looking forward to working with them.” EDF Community Investment Manager Sally Cottrell said: “EDF Energy is delighted to be working in partnership with Marie Curie Cancer Care. We aim to raise funds to support the work of Marie Curie’s fantastic nurses and to provide our staff with volunteering opportunities to really make a difference.” EDF Energy is one of the UK’s largest energy companies and the largest producer of low-carbon electricity, producing around onesixth of the nation’s electricity from its nuclear power stations, wind farms, coal and gas power stations and combined heat and power plants. EDF Energy employs around 15,000 people so the potential for exciting and innovative staff fundraising activity is high.

Pictured (l-r) at Hinkley Point B power station are Communications Consultant, EDF Energy Nuclear Generation Debra Page; Senior Corporate Account Manager, EDF Energy Account Lead Lucy Caslon; Station Director, EDF Energy Hinkley Point B Mike Harrison; Joanna Hancock, Corporate Account Management Team Leader; and Arun Sharma, Head of Corporate and Commercial

New nursing service for Orkney We welcome new Orkney’s first-ever Marie Curie Nursing Ser vice is set to star t operating this summer. The pilot service will operate in the largest of the Orkney islands – Mainland. It is being run in partnership with Stromness and Dounby Surgeries. The charity is currently recruiting Registered Nurses (and possibly Senior Healthcare Assistants) to work in people’s homes on the island. Volunteer Project Manager Harry Bunch said: “There is currently no Marie Curie service at all on the island. Now we are working with the GP surgery on a one-year pilot. “While this is quite a small contract, we see it as an opportunity to get our foot through the door and demonstrate the value of Marie Curie nursing being available to complement existing services.” The charity is setting up the service using the Optimal Use of Remote Rural Resources model that is designed for operation in parts of Argyll and Bute – a challenging and remote rural area in the Highlands. Nurses are fully Marie Curie trained, although they do not require to commit to a minimum number of hours, and often also work for the District Nursing service or Community Hospital, providing Marie Curie care when it is required. Marie Curie works especially closely with the District Nursing Service in these areas.

Welsh care plan

Stromness on Mainland, Orkney

Head of Service Development, Diana Hekerem said: “I am thrilled that we have managed to find a way to deliver care in Orkney – this will be our most remote rural service to date. “The local GPs understand that this is the service that will make a real difference to patients, and it’s a service that can be adapted, despite the barriers in remote rural areas. They were really enthusiastic about our proposal. We hope to be able to demonstrate the effectiveness of Marie Curie nursing, and eventually to extend our service across the whole of Orkney.” Orkney is one of only two parts of Scotland where Marie Curie nursing is not yet available – the other is Shetland.

Orkney and Mainland There are 70 Orkney Islands, (20 inhabited) 10 miles north of the coast of Caithness. Mainland – the largest – has a population of 15,300 (approx 75% of the population of Orkney). Mainland is the sixth largest Scottish island, with an area of 202 square miles.

Marie Curie Cancer Care has welcomed the publication of the Welsh Government’s new End of Life Care Delivery Plan, the first comprehensive strategy on end of life care in Wales. Head of Policy and Public Affairs in Wales Simon Jones said: “We are particularly pleased with the emphasis on providing end of life care via integrated working between the NHS, local government and third sector providers, which will allow terminally ill patients easier access to the care they need. “Marie Curie is already working alongside health boards across Wales on a number of services that enable people at the end of their life – and their families – to get the support and care they need when and where they need it. “The Delivery Plan sets out some important indicators to measure success including numbers of people dying in the

Simon Jones on BBC Wales Today

place of preference. Equally important, if not more important, will be the patient stories and experience gained through the iWantGreatCare surveys. It will be this feedback that has the ability to get to the heart of whether services are being delivered in an integrated and patient-centered way. “End of life care in Wales has come a long way over recent years and if all those involved in this care fully embrace the vision and actions set out in Together for Health – Delivering End of Life Care then even more will be achieved.”


6

MAY 2013

BIG GRANTS FOR NEW HOSPICE IMPROVEMENTS Marie Curie Cancer Care has been awarded grants totalling £942,000 to fund major redesign and refurbishment projects at its hospices in Bradford, Newcastle and Hampstead (London). The money was awarded under the Department of Health capital grants programme 2012. A total of 176 hospices will benefit from the fund. Head of Statutory and Lottery Fundraising Declan Ryan said: “We are delighted with these awards, which will fund significant building work to improve life for patients at these three hospices. “All these projects are really needed – and they will make a significant improvement to the quality of patients’ lives. We had to complete detailed applications showing how we would to enhance the healing environment for patients – the basis on the programme. We put in for three projects, and received

funding for them all.” The Department of Health capital grants programme 2012 set aside £60 million to fund physical improvements that directly help patients at hospices in England. It was administered by Help the Hospices and received 183 applications totalling over £91 million. Announcing the successful projects at St Luke’s Hospice in Sheffield, Deputy Prime Minister Nick Clegg said: “Hospices help patients and their families at what can be the most difficult part of their life. This extra funding will help bring hospices up to date, so staff and volunteers can work in modern environments, helping them continue to provide wonderful support with compassion and kindness. And patients will see a huge difference in their surroundings that play a considerable part in helping them psychologically and physically.”

Before

After The Bradford family area before (left) and after (right)

The charity plans the following improvements:

Bradford The in-patient rooms and adjoining conservatory at the hospice will be redesigned to provide improved facilities and a more comfortable environment for patients and their visitors. Outdated ensuite facilities will also be refurbished. Hospice Manager Elaine Hill said: “We are delighted to receive the grant to enable us to improve facilities and make a more comfortable environment for the patients and visitors. “The hospice is 11 years old. The ensuite facilities definitely need improving, as water leaks into the walls. “The in-patient area will be redecorated with curtains, bedding and soft furnishings. Our conservatory gets too hot in the summer and too cold in the winter, so we’ll be installing better heating and cooling systems as it’s a very nice room that’s underused.”

Before

Hampstead The charity will carry out a complete redesign of the Day Therapy Unit. The area will be redeveloped, and the gym upgraded. A high level terrace garden will be developed on an existing balcony, and a long, dark corridor transformed into a well-lit indoor street. Hospice Manager Jackie Laidlaw said: “It’s very welcome, and the team are really excited about it. “The in-patient unit was refurbished in 2009, but not the Day Therapy unit, so it’s a bit tired and worn-out looking. Around 600 patients use the unit every year. With this grant, we’ll be able to make better use of the space for our increasing patient numbers. “We also have a lovely balcony that’s very tired-looking - so we plan to bring the garden up to the third floor.”

After The Hampstead balcony before (left) and after (right)

Before

Newcastle A major extension to the dining facilities will provide a garden cafe for patients and their families. This will allow family and friends visiting patients the opportunity to buy a hot meal or a snack without leaving the hospice. The environment will be enhanced with plants, flowing water and coloured glass. Facilities Manager Gill White said: “One thing that always comes up in our user surveys is that there is nowhere for patients and relatives to get anything to eat away from patients’ rooms. This new café is going to be a huge improvement for families, many of whom spend all day at the hospice. They’ll be able to get a snack or a hot meal away from the ward, and patients will be able to enjoy visiting the café if they are well enough. We are working with our user group and the architect to come up with the best possible design. The plans look great – the café will open out into the day care garden.”

After The Newcastle cafe area before (left) and after (right)


MAY 2013

Big boost from city brains A painter who produced a work of art on the night, a fruit identification challenge and a new electronic bidding system helped Marie Curie’s London Brain Game raise a net £164,000. The black tie corporate quiz attracted 35 teams, bringing the total raised to within a whisker of 2011’s all-time record. Corporate Events Manager Gemma Howell said: “It was an amazing night, with some great moments – and our celebrities were fantastic, especially our quizmaster, Mark Dolan. “The auction was a huge hit, with the new Ibid system helping us bring in £35,000 – a big increase on last year’s total. We had a hilarious round presented by Rosemary Schrager, who challenged everyone to identify curious and exotic fruit. “And Ben Mosley – our live painter – started his picture at the beginning of the evening, and it was sold for £4,500 at the end. “The purpose of the evening was brought home to everyone by Sarah Wyn-Jones, who told us about how her husband Gareth was cared for at the Marie Curie Hospice, Hampstead. She was followed immediately by a pledging appeal by Fabian French which raised £25,000.” Winners on the night were the team from the Daily Telegraph.

Rockspring to support us

New shop Marie Curie Cancer Care benefited from an Alton United XI football match against Manor Colds, in appreciation of popular coach Jim Barrett. The match, in Anstey Park, Hampshire included many players from the late 80s and 90s who were coached by Mr Barrett, who picked the Alton team for the match.

Scam gang jailed A gang of bogus collectors from the Southampton area who used fake Marie Curie collection tins and bogus identification for their own gain have been sent to prison. Ringleader Gordon Coe, 65, was jailed for four years. Four accomplices were jailed for between 12 and 20 months. The scammers were caught after a fake collecting tin and identification attracted the suspicions of a pub customer, who reported it to Marie Curie. Judge Derwin Hope told Southampton Crown court that nothing the charity did in any way caused what happened. He said the charity was “wonderful” and “genuine”. The charity’s “unlimited cooperation” was praised by the police. Charity fraud on this scale is exceptionally rare. Any suspected fraud should be reported immediately.

Artist Ben Mosley in action

Minorities are still underrepresented: conference People from Black, Asian and minority ethnic (BAME) backgrounds continue to be underrepresented in palliative and end of life care services, including hospice services. That was the key finding of a major intelligencegathering project carried out by the Cecily Saunders Institute for Marie Curie and the National End of Life Care Intelligence Network. Other findings highlighted • A lack of sensitivity to cultural/ religious differences • lack of availability of translators • unmet needs regarding religious or family requirements and • low availability of training for healthcare professionals. The results were released at a national workshop event. Senior Lecturer in Palliative Care Dr Jonathan Koffman and Research Associate Natalia Calanzani (both from the Cecily Saunders Institute) presented them to more than 150 delegates at the Grand Connaught Rooms, London. The event was organised by Senior Project Manager (Diversity) Dr Ian Gittens. He said: “The

workshop was a very positive event, with inspirational speakers. We know that more needs to be done in terms of identifying people’s needs in relation to end of life care services. “We ran workshop sessions which sought to identify the next steps for government and policy makers; service commissioners; service design and service delivery experts; researchers and research funders; and BAME communities. “Now we are distilling the outcomes of the workshops and the overall event. We will be publishing this, and we plan to produce a policy paper for a parliamentary event in the autumn. “Throughout the day, delegates were saying how different it was from anything they had attended previously on the subject, and talking about what they need to do to make a difference. “We had people attending from a wide range of backgrounds, including doctors, nurses, service commissioners, social workers, researchers, policy experts, academics and people from the Race Equality Foundation and various faith organisations.���

Face the music Photo: Jane Stokes © DJ Stotty Images

Commercial property management company Rockspring is supporting Marie Curie and Whizz-kidz in its first major charity partnership. Preparations are now underway for an ambitious fundraising event this summer, with a sevenday bike ride from Rockspring’s most northerly UK property (in Aberdeen) to its most southerly (in Southampton). The 1,200 km sponsored cycle is expected to raise £50,000, of which £20,000 will go to Marie Curie. Rockspring has recruited a 14-strong team, which will be joined by other staff for various stages, including Managing Director Edmund Craston. Corporate Development Manager Peter Lee said: “We are really pleased to be working with Rockspring. They are very engaged with our work, and very enthusiastic and active fundraisers. They’ve been getting a lot of sponsorship pledges from clients for the bike ride, and it’s shaping up to be a big success.” Rockspring is based in London, with seven offices across the UK and continental Europe.

7

A night of music and entertainment entitled Face the Music and Dance is set to raise funds for Marie Curie. The show, on 26 May, at Camberley Theatre, Woking, Surrey is being organised by professional dancer Angela Tidbury and her sister Claire. It will feature an 18 piece band, 12 dancers and four singers.

Natalia Calanzani

Other speakers at the workshop included Professor Mark Johnson o f D e M o n t e f o r t U n i v e r s i t y, Yasmin Gunaratnam of Goldsmith University Marie Curie’s project partners were the Department for Health, Help the Hospices, the National Council for Palliative Care, South West Public Health Authority, Leicester Social Care Development, and the Race Equality Foundation. The event was part of an ongoing programme of work on that is looking at delivering inclusive end of life care services to meet the needs of all sections of the population.

Onesie funds Students at Thomas Aveling School, Rochester, Kent held sponsored races in their onesies to raise money for Marie Curie. The year 10 fundraising drive raised more than £250.

Bungee leap Staff at the Duck Inn in Oakenshaw, West Yorkshire are set to take to the skies in a sponsored jump using the UK’s highest mobile bungee platform. The 200-foot jump will take place at a fundraising day.


8

MAY 2013

Top award for pharmacist New shop A new Marie Curie Shop has opened in Gravesend, Kent. Fundraising Director Fabian French joined the shop team for the first day’s trading.

Curling cash The Stranraer Marie Curie Fundraising Group organised its second curling bonspiel at North West Castle Hotel. A total of 80 curlers entered the event, which raised nearly £1,500.

UNISON support Marie Curie Cancer Care benefited from a pamper evening organised by UNISON Down Lisburn. Union members were treated to beauty treatments from health and beauty students, and a twocourse supper provided by hospitality students. The evening raised £300.

Wolf runners Members of Marie Curie’s Individual Giving team completed on a tough 10k off-road run through the Wa r w i c k s h i r e c o u n t r y s i d e taking on a series of obstacles (man-made and natural) on the way. Their participation in the Wolf Run has raised £1,500 for Marie Curie to date.

Fashion fundraising A charity fashion show organised by Ilkley Marie Curie Fundraising Group raised more than £900. The event, at Clarke Foyle Centre, sold out, with more than 100 people attending. Garments were supplied by Ahernes of Hillfield, and models included fundraising group members and staff from the Marie Curie Hospice, Bradford

Truck total Marie Curie Cancer Care has been presented with a cheque for £58,000 raised by the organisers of the 2012 Truck Convoy in Irvinestown, County Fermanagh. Organisers George Gordon and Joe Mahon handed over the money to fundraising manager Sheena Havlin.

Peter Armstrong, Pharmacist at the Marie Curie Hospice, Belfast, has been named Hospital Pharmacist of the Year for Northern Ireland. He received a trophy at the Northern Ireland Healthcare Awards, held at the Europa Hotel, Belfast. Peter, who also works at Belfast City Hospital, has been working on a project to integrate the pharmaceutical care of hospital, hospice and community palliative care patients. “I was delighted,” he said. “I still don’t know who nominated me. I had to attend an interview, and only found out that I’d won the award on the night. I’ve been with Marie Curie for six years, dealing with all issues relating to medicines in the palliative care setting. I provide a clinical pharmacy service and work directly with patients – from reconciling their medicines on admission to counselling them

on their medication when they go home. I set up an initiative called the Community Pharmacy Palliative Care Network that’s about training community pharmacists to have a more specialist role. It means that when we discharge patients with complex needs there is expertise in the community.” Minister for Health Edwin Poots spoke to the attendees. He said: “You should be proud of the excellent service you provide for the people of Northern Ireland, whether or not you have received an award. “I hope that you will all have been inspired to continue your good work. These awards recognise and celebrate the high standard of healthcare carried out in the province and also to encourage innovation and the translation of evidence into practice to improve the quality and safety of patient care.”

Pharmacist Peter Armstrong (centre) with Mark Warner (left) of BOC Healthcare and Professor Michael Scott (right)

Peacock Awards will celebrate nurses Marie Curie Cancer Care has launched two new awards to celebrate the work of its nurses and the difference they make to patients, families and carers. The Peacock Awards are open to all the charity’s Registered Nurses and Healthcare Assistants across the Marie Curie Nursing Service and Marie Curie Hospices. Both are individual (not team) awards. The awards will be presented in September 2013 at a ceremony which will honour nurses’ achievement and celebrate their contribution at Marie Curie’s AGM in London. The winners of each Peacock Award will receive a prestigious Peacock Award Trophy and an individual prize. A s s i s t a n t D i r e c t o r ( Pa t i e n t Services) Dawn Tame-Battell said: “These awards are here to recognise an exceptional contribution to ensuring patients receive the highest quality care at the end of their lives. “We are asking Marie Curie staff to consider nominating an exceptional individual from the nursing service or our hospices, someone who you feel really deserves one of these awards, an individual who stands head and shoulders above the rest for their contribution to high quality, compassionate care, putting their patients, carers and families at the centre of what they do.” Nurses may nominate themselves for either award. Only one nomination can be made per person for each award. • To enter, go online and fill out the online nomination form from 7 May at: mariecurie.org/ peacockawards Paper nomination forms will also be available to Marie Curie nursing staff.

The awards will celebrate the difference made by Marie Curie Nurses

If you have any questions, email: peacocknursingawards@ mariecurie.org.uk or call 020 7599 7383. The deadline for all nominations is 28 July 2013. There are two award categories:

Clinical Award This award will recognise an individual who has used their clinical knowledge, competence and skills to significantly improve and facilitate exceptional patient care in the setting in which they work. For example, this could be someone who has motivated and inspired those around them with their enthusiasm and commitment to improve patient care and experience delivered by their team.

The Above and Beyond Award This award will recognise an individual who regularly goes above and beyond in their role through their demonstration of exceptional commitment towards delivering care, showing both compassion and dedication in meeting the needs of their patient, family or carer. The individual ensures that patients receive their Marie Curie services against all odds, or facilitates a wish or activity. For example: this could be a nurse who has been exceptionally innovative and helped to facilitate a different way of communicating with families where perhaps a strong language barrier has been present.

The Peacock family The Peacock Awards are sponsored by the Peacock Family – long-standing supporters of Marie Curie Cancer Care. Since 1970, generations of the Peacock family have generously donated to the charity. The family are extremely passionate about the nursing care provided by Marie Curie. The awards have been developed in partnership with the Peacock family in celebration of the difference Marie Curie Nurses make to patients, families and care.


MAY 2013

RESEARCH CONFERENCE SPECIAL

+

RESEARCH CONFERENCE SPECIAL

+

RESEARCH CONFERENCE SPECIAL

+

RESEARCH CONFERENCE

9

+

CONFERENCE LOOKS AT EQUALITY ISSUES Marie Curie Cancer Care’s annual research conference asked the question: Palliative and end of life care for all – is everybody equal? S p e a ke r s f r o m a r a n g e o f organisations focussed on different aspects of inequality in palliative care – looking at cultural differences; communication with patients with learning disabilities; provision for long-term prisoners; and the needs of lesbian, gay, bisexual and trans sexual (LGBT) people. Chief Executive Dr Jane Collins introduced the conference, speaking of the importance of research and her wish to increase the charity’s research in future. “There are so many questions to be answered about how best to provide end of life care,” she said. She welcomed the theme of the conference, speaking of her concern that some groups of people may not get the highquality care that they need. Medical Adviser Dr Teresa Tate, who leads the charity’s research work, introduced speakers and presented research awards. She said: “It was an excellent conference. The high-quality speakers gave us all some very challenging things to think about. I particularly enjoyed Jonathan Koffman’s thoughts on cultural differences, which led us into our joint conference on black and Dr Teresa Tate

minority ethnic themes (see page 7). “The research posters presented were excellent – they showed a good selection of high-quality research, and were really well presented. “Inequality is an important theme. The whole day demonstrated that there are many kinds of inequity in the way that we deliver palliative care in many settings. One area which we did not consider and which I believe we should look at in the future is the inequality experienced by older people in end of life care. “At the conference we formally announced the recipients of the third round of awards made by the Marie Curie Cancer Care Research Programme. We are now beginning to hear from some of the researchers we funded in earlier rounds: we had excellent talks from – among others – Catherine Evans on mental capacity and processes of consent in research; and Anne-Sophie Darlington on transferring patients from critical care home to die. “We are now beginning to think about potential themes for our next research call and would encourage people to contribute to this work.”

AWARDS FOR PALLIATIVE CARE RESEARCHERS

Elizabeth Lowson receives her award

Dr Susie Wilkinson with award winner Kate Nolan

The Joanna Mugridge Awards 2013

Susie Wilkinson Award

The Joanna Mugridge Awards 2013 were made for the best poster presentations at the conference. The awards were established in memory of Joanna, a nurse at the former Marie Curie Hospice, Caterham. First prize was presented to Dr Elizabeth Lowson of the University of Southampton for her poster: A phase I-II feasibility trial of cancer carer medicines management: an overview. “Research shows that carers have a lot of fears and anxieties about end of life pain medication, and some of the beliefs that crop up can create barriers to appropriate relief of symptoms,” Dr Lawson said. “The belief about medication being addictive may lead to patients being underdosed.” Her poster explains plans for a two-stage feasibility study involving educating family carers about medication. The researchers have begun developing an educational intervention for family carers so that they can feel more confident about pain medication for patients with advanced cancer at the end of life. “Phase 2 will be testing out the intervention with specialist and community nurses, patients and carers in Hampshire and South Wales,” Dr Lowson said. “It will be a feasibility trial to find out what issues emerge,what we need to improve on, and to begin to understand what the impact is. We then plan to apply for funding for a full randomised controlled trial.” The research is led by Principal Investigator Professor Sue Latter at the Faculty of Health Sciences, University of Southampton. The main collaborator is Professor Jane Hopkinson at Cardiff University and the project is funded by the Dimbleby Marie Curie Cancer Care Research Fund. The second prize was presented to Dr Michael Cooke (pictured right) of Marie Curie for a collaborative poster with the Nuffield Trust: How representative are patients who access the Marie Curie Nursing Service of the population of people who die each year in England?

The Susie Wilkinson Award was presented to Staff Nurse Kate Nolan, who works at the Marie Curie Hospice, Liverpool. While working at the hospice, Kate successfully applied to be a research assistant on a National Institute of Health Research-funded study at the Marie Curie Palliative Care Institute Liverpool, examining the impact of the Liverpool Care Pathway in intensive care and nursing home settings. Kate was instrumental to the early success of the project – stratifying, cataloguing and recruiting intensive care units and nursing homes. She then became a Research Associate on a project funded by the Dimbleby Marie Curie Cancer Care Research Fund examining the impact of a training programme for volunteers to support dying patients in the acute setting. Kate designed a psychometric evaluation tool and carried out in-depth qualitative interviews with volunteers, patients’ relatives and clinical staff. Kate’s abstract on this study’s methodology and early findings have been accepted for the 2013 European Association of Palliative Care conference. Kate was presented with the award by Dr Susie Wilkinson, retired Head of the Marie Curie Palliative Care Research unit at UCL. Susie set up the award on her retirement to support the development of a member of Marie Curie staff.


10

MAY 2013

RESEARCH CONFERENCE SPECIAL

+

RESEARCH CONFERENCE SPECIAL

+

RESEARCH CONFERENCE SPECIAL

+

RESEARCH CONFERENCE SPECIAL

RESEARCH CONFER Dr Jonathan Koffman

Dr Irene Tuffrey Wijne

Multicultural needs

People with learning disabilities

Dr Jonathan Koffman focussed on multicultural needs at the end of life. He spoke about the changing demographics of the UK, and the increasing number of patients from minorities in older age groups who will require palliative care. He looked at issues that could arise when professionals encounter patients and families from different backgrounds from their own. He identified attitudes to pain control, spirituality and frankness about a terminal prognosis as areas where patients may have different expectations from those treating them. He also noted that basic human needs identified by Cecily Saunders remain constant. “Rather than relying on cultural fact files, reverting to intuition and naïvety idea,” he said. may be a better idea,

Dr Irene Tuffrey-Wijne spoke aboutt communication with patients with learning g disabilities at the end of life. She explained that around 2% of the population have a learning disability – and d often this has not been formally identified. Issues for patients include a lack off knowledge about their bodies and illnesses, a lack of recognition of their emotions by y healthcare professionals and a culture in n which they are protected from bad news. She presented practical communications tips, including offering patients the first appointment of the day, doubling g appointment times, speaking to the person n with learning difficulties first, using an n adult tone of voice without shouting and d clearly explaining who you are and whatt you are talking about. She warned that people with learning war g disabilities disabilitie may tend to say “yes” to everything, everythin because they perceive the healthcare professionals as powerful, and d that if pres presented with a list of options, they y may tend to t repeat the last. Dr Tuffre Tuffrey-Wijne is currently conducting g a study into int the factors that affect patientt safety of p people with learning disabilities in NHS hospitals. ho “Every y year, 1,200 patients with learning g disabilities disabilitie die avoidable deaths due to poor healthcare,” she said. health

Dr Kathryn Almackk

Lesbian, gay, bisexual and trans people (LGBT) Dr Kathryn Almack presented a talk k entitled Paying Attention to difference too provide equality: an overview of research h addressing the palliative and end of lifee care needs of lesbian, gay, bisexual andd trans people. Dr Almack’s own research h project in this area The Last Outing, is funded by the Marie Curie Cancer Caree Research Programme. “We’ve had a whole raft of legislation. But we know very little about the evidencee base around practice,” she said. “There aree 12 papers across the world focussing on n LGBT experiences at the end of life. Thee only UK paper was one relating to LGBT T carers. There is a huge gap in the evidencee base,” she said. Working with older patients at caree homes, Dr Almack was often told “Wee don’t have any of those people here.” “We know very little about encounters with health and social care,” she said. “Wee don’t know what these encounters will bee like, and how they will be impacted by y being frail and vulnerable. We need to recognise support networks that may bee unorthodox. “Our oldest generation of LGBT peoplee lived through an era when social attitudes were less tolerant, and the legal system m criminalised rather than protected LGBT people. “Older people are adept at managing networks that avoid discrimination and avoid coming out in certain situations. Or they may hold back and assess the situation before coming out.”

Dr Catherine Evans

Mental capacity and consent Dr Catherine Evans spoke about mental capacity and processes of consent in research on end of life care. Dr Evans holds a Marie Curie Cancer Care Research Programme project grant on this topic. “Without involving patients at the end of life in research, we won’t be able to strengthen the evidence base,” she said. “It’s a difficult area. There seems to be massive variation between ethics committees and no standard process when it comes to involving adults who lack capacity.” Her study included a questionnaire survey sent to leading academics in the field asking about their own work with adults who have compromised capacity, and their knowledge of innovative techniques for seeking consent. The researchers then carried out a stakeholder workshop, which included terminally ill patients and carers, to draw up recommendations. “From studies, we find that hospice patients do want to get involved in research as a final altruistic act,” she said. “A A more transparent and consistent process was the call.”


L

11

MAY 2013

+

RESEARCH CONFERENCE SPECIAL

+

RESEARCH CONFERENCE SPECIAL

+

RESEARCH CONFERENCE SPECIAL

+

RESEARCH CONFERENCE SPE

RENCE Dr Mary Turner

Dr Andrew Fletcherr

Dr Anne-Sophie Darlington

Kathryn Lord

Palliative care in prisons

Managing medication

Transferring patients home to die Tra

Dementia and pain De

Dr Andrew Fletcher spoke about the provision of palliative and end of life care in prisons in England and Wales. He carried out a survey on the need d for care in prisons, obtaining data from m 39 prisons. Between 2010 and 2012, 113 prisoners died of natural causes, with 68 requiring palliative care. “We looked at access to specialistt services and the education of staff,” he said. “There was evidence of quite clearr education programmes, and staff with h palliative care diplomas. “I had anticipated there would be difficulties with using strong opioids. Butt they had found ways to get around them. One prisoner had a locked box fixed to the floor of her room. She had the key. “Palliative care provision in prisons ns has come a long way in the last six years. There are still challenges around budgetary getary y issues. But there is evidence of good d practice and strategies to develop services.” vices.”

Dr Mary Turner spoke about research into carers’ delivery of medication for patients dying at home as part of the larger (Marie Curie Cancer Care Research Programme funded) Unpacking the Home study, currently underway at Lancaster University. “We aimed to elicit accounts of family carers who had witnessed the dying at home of an older person,” she said. The researchers found that many carers were anxious about managing patients’ medication. “For carers it can be a big responsibility to take on managing medication for someone who is dying. For most of the 24 hours of the day, the family were on their own. “There’s There s a real need for information and support. There’s also potentially a greater role for community pharmacists and healthcare professionals,” she said.

Dr Anne-Sophie Darlington spoke about her research into transferring patients from critical care home to die, funded by a Marie crit Curie Cur Cancer Care Research Programme project grant. proj “We “W sent a survey to lead consultants and nurses in 409 critical care units. We had 108 responses – 65 said they had experience of it.” exp The T researchers presented the healthcare professionals with a questionnaire, getting pro them to agree or disagree with a series of statements about the practicalities and stat ethical issues around transferring patients ethi from critical care home to die. “We “W asked them about the barriers and asked ask them to rank them. Access to care in the community was number one,” she said. “They relatives’ “Th Th hey were also worried about relatives ability abi lity to cope because they said their expectation exp pectation of the dying process can n be unrealistic.”

Ka Kathryn Lord from the Marie Curie Pa Palliative Care Research Unit at UCL spoke about behaviour, psychological issues and ab pain in dementia patients, and how these pa are managed. They studied 230 patients in two acute hospitals. ho “50% of patients were noted as being in pain in their medical notes. Pain was still pa an issue right up the end of life,” she said. “50% were noted as having some kind of behavioural problem up to the end of life. Of 21 individuals who were expected lif to die, three quarters were on the Liverpool Care Pathway. Five were referred to the Ca palliative care team. pa “There is not a consistent model for patients with dementia. Palliative care pa teams involved.” tea ams were not regularly involved.


12

MAY 2013

SWIMMERS SPLASH OUT More than 20,000 swimmers plunged into more than 600 pools across the UK to take part in the Swimathon, shortly after Marie Curie People went to print. Senior Fundraising Product Manager (Events) Jenni Thompson said: “We had a target of 18,000 swimmers, and we’ve already topped it. The total number can only rise, and the more swimmers who sign up, the more money we will raise.” Swimathon President Duncan Goodhew led a special Swimathon squad on a 5k team challenge. He teamed up with TV presenter Tim Lovejoy, Marie Cure supporter Sue Barclay, who is swimming in memory of her father, Swimathon regular, Kasia Larkas Mossop and Swimathon Facebook competition winner, Jennifer Sutton. The squad swam lengths of London Fields Lido, on a cold spring day. Olympic Gold Medallist Duncan said: “The Swimathon Squad brought together five swimmers from a wide variety of backgrounds, ages and abilities and we’re so pleased to have completed our 5k challenge to help raise funds and awareness of Marie Curie Cancer Care. We hope the squad has been an inspiration to the thousands of swimmers who every year dive into the Swimathon challenge regardless of their swimming ability.”

Pictured (l-r) are Duncan Goodhew, Kasia Larkas Mossop, Sue Barclay, Tim Lovejoy and Jennifer Sutton

Smartphone scheme wins Big Idea Michelle Bate with her Smartphone

A smart idea involving Smartphones made Greater Manchester Community Fundraiser Michelle Bate the winner of this year’s Big Idea competition to find the best new way of fundraising for Marie Curie. Michelle came up with the suggestion involving using Smartphone QR codes on posters, stickers and other charity items to supplement the charity’s unmanned collecting boxes. She won a popular vote – facing tough competition from a community car wash scheme proposal. This idea will now be developed by the charity. Michelle said: “I’m really pleased that I have won the Big Idea. I really believe in the idea and really excited about its potential, and I’m confident

that it will raise a lot of money. No other charity is giving this opportunity to their supporters, so it would be amazing if my idea was produced and out there before any other charity cottons on. “As a Community Fundraiser, myself and my colleagues often have to inspire and motivate our community volunteers to place more and more collecting tins, but we always hear the same feedback – their customers don’t pay in cash, they were worried about the safety of the tin, or there is no space on the counter. “ We o f t e n t h i n k o f o u r ‘traditional’ supporter and how they support us, but I don’t drop my cash into a tin because I don’t go to the bank, I don’t buy a newspaper in the corner shop, I don’t go into the takeaway and order my Friday Chinese feast, I do all this on my phone. I realised this is how I would donate too. “Most people who use a Smartphone will have it with them everywhere they go, so I wanted to create an opportunity for those people to donate to Marie Curie

wherever they go too. “The QR code placement will mean that tin safety is not a problem anymore, and that we are not restricted to the traditional tin placements, our QR codes can go anywhere which I’m really excited about. There are so many opportunities that we are missing out on, and hopefully this new idea will bridge the gap from donating in the newsagents when you’re buying a paper, to scanning in a donation on the bus on the way to work, or the kebab shop at 2am when you might be feeling more generous than usual.” Head of Regional Fundraising Mark Winton said “I was really pleased to see a winning idea that combines a development in modern technology with a very traditional fundraising method like our static collecting box campaign. I really hope we can reach new supporters we are not currently reaching using a method they use for their other every day transactions. The development of the idea will be one of the things the charity’s new Head of Innovation will work on.”

Marie Curie User Sur vey 2012 Marie Curie Nursing service Marie Curie Hospice inpatients outpatients Marie Curie Hospice day therapy and patients Marie Curie Hospice community team

Blue button shows user survey results The results of Marie Curie Cancer Care’s User Survey of patients and families are now available on the Blue Button on the charity’s intranet. The survey has been presented as PowerPoint slides which can be used to support fundraising, commissioning and other presentations about the charity. Other new data available on the Blue Button includes details of projected births and deaths in all four countries of the UK separately. Previously, figures provided were for England and Wales. The front page of the charity’s intranet is also being revamped, with new icons for all items.


MAY 2013

13

Pop the kettle on for us Marie Curie People readers are being asked to put the kettle on and get together for the charity’s annual Blooming Great Tea Party. The charity is aiming to recruit 7,000 supporters to hold tea parties across the UK throughout June and July, and help raise over £750,000. Fundraising Product Manager Hannah Rafferty said: “Now is the time to sign up for what will be a truly great tea party event. Last year, we had a lot of competition from street parties for the Golden Jubilee, but this year, we will be running the best tea parties in the neighbourhood. “We have a fantastic tea party pack for everyone who signs up – with celebrity recipes, handy bunting and a tea-themed quiz. We are particularly keen to encourage Marie Curie staff and volunteers to participate, So please go online and sign up to hold a party, and tell all your friends about it.” • To sign up, visit mariecurie.org. uk/tea or call 0845 052 4184. Get lots of recipes by following our top baking blogger Suzy Pelta at mariecurie.org.uk/blog

Blogger Suzy Pelta with Hannah Rafferty and Naomi Jacobs

Happy birthday for Marie New guide to In Curie Helper service Memory Funds Marie Curie Cancer Care celebrated the first year anniversary of its Marie Curie Helper service in East London, delivered in partnership with St Joseph’s Hospice. Over the year, Marie Curie Helper volunteers provided over 425 hours of support to 24 terminally ill people and their families. The service is currently available to those living in City and Hackney, Tower Hamlets, Newham. The one-year milestone was marked at an event at St Joseph’s, where local people supported by the service, referrers and volunteers came together to share their experiences and celebrate the success of the service’s first year. Patricia Alexander from Hackney, who has been matched with a Marie Curie Helper volunteer Christine since March 2012, said: “The Helper service has made a big difference to me. I feel if I need any help I’ve only got to ask. She is someone to talk to and my best friend. I can speak to her about subjects that my family find very difficult to talk about without it being emotional.”

Director of Community Involvement Ruth Bravery, Service Manager Clare Hodder and Chief Executive, St Joseph’s Hospice Michael Kerin

Service Manager Clare Hodder said: “We’re really excited to be celebrating a successful first year of our service. Marie Curie Helper volunteers can be a real lifeline, providing companionship and helping to reduce the social isolation faced by some terminally ill people and their carers. “We’re keen to make sure as many people as possible in East London can benefit from our service, which is available for people throughout

the terminal phase of their illness, from the point of prognosis. We would urge anyone who thinks they may be able to benefit to get in touch and we look forward to supporting many more people and families over the next year and beyond.” Referrals are welcomed from any health or social care professional. Families who need the service can also contact the service manager directly for support.

Marie Curie Cancer Care re has produced an easy to read guide uide to In Memory Funds for all staff ff and volunteers. The new document is available ilable on the Marie Curie intranet, et, or can be requested from In Tribute Manager Harvinder Channa. “It’s aimed at all staff and volunteers, from all parts of the charity,” Harvinder said. “We wantt to help people to speak to bereaved families and (when en appropriate) patients about out In Memory Funds. It covers what In Memory Funds are – using examples – and tells you everything you need to know about how to set one up, what one looks like, and how families can tell the life story of a loved one through their online fund. “It answers a lot of the questions colleagues might have about In Memory Funds, including when it might be appropriate to talk about them.”

Harvinder with the new guide

The guide also includes key messages about In Memory Funds that colleagues may wish to include in documents that they are creating. • The guide can be found at: SharePoint folder Fundraising > Individual Giving > In Memory Or you can call Harvinder on 020 7599 7706 or email harvinder. channa@mariecurie.org.uk to request a copy.


14

MAY 2013

Take a look at our photo library More than 1,600 photos have been added to Marie Curie Cancer Care’s Library database of images and case studies. They include little-seen images from professional shoots in homes and Marie Curie hospices. The Library also contains the stories of people who have a connection with Marie Curie, be they nurses, fundraisers, volunteers, patients, carers, or their friends and families. Senior Graphic Designer Liz Cuthbertson said: “There are photos of patients, nurses, relatives, physios, Great Daffodil Appeal collectors, doctors and researchers. There are photos of hands being held, advice being given and parties being thrown. There are photos of hospices, medical apparatus, collection tins and cakes. And there are photos Christmassy, sunny, cosy, medical, funny and sad. “By using the right image from the Library in our communications, we will be able to convince people of the importance of our work and, ultimately, help us raise those muchneeded funds.” • If you think membership to the Library could help you with your work, just visit thelibrary. mariecurie.org.uk and click the link to apply for an account, or email thelibrary@mariecurie.org.uk

Some of the images that can be found in the library

Damp daffodil collections raise £2.1 million Great Daffodil Appeal collections have so far brought in £2.1 million – despite appalling weather throughout March. Income is so far just in line with expectations – 80% of the way to target. More than 28,000 people turned out to collect, against 25,000 last year (in much better conditions). Senior Fundraising Product Manager Sophie Mackinder said: “We had dreadful weather and fantastic collectors – and we’re still hoping to hit our target. The total raised by each person was significantly down – from £90 to £77, and that was almost certainly down to the conditions. There simply aren’t as many people out in the street in bad weather. “But the sheer number of collections is making all the difference – and we are very grateful to all our volunteers, especially those who turned out in the cold and wet. They really did make a difference.” Cash from unmanned collections boxes is still being counted, with results likely to be available at the end of May. A rainy collection in London in March


MAY 2013

15

HOW ANALYTICS HAS AN IMPACT • How can we present a big spreadsheet of data in a way that shows, at a glance, the figures that really matter? • Does the Marie Curie Nursing Service really make it possible for people to die at home? • Why can’t we always get nurses to patients? These are the kind of questions that Marie Curie Cancer Care’s six-strong Analytics team tackles. Whether they’re scrutinising spreadsheets or drawing up strategy recommendations, they’re interested in weighing up evidence, analysing data and finding the answers to questions about the impact of care on patients’ lives.

‘‘

There’s no point in doing any of this if it doesn’t impact on patients and families. Dr Michael Cooke

’’ Dr Michael Cooke

Head of Analytics Dr Michael Cooke spoke to Marie Curie People about the team’s work. “There’s no point in doing any of this if it doesn’t impact on patients and families,” Michael said. “Our work is all about supporting the charity and the people we work with to make decisions that are influenced by data and evidence. “We want the charity’s income to be used as well as possible for patients at the end of life. One of the ways to maximise spending is to understand the impact that doing different things has. For example, what’s the impact of the Marie Curie Nursing Service, or the impact of Marie Curie Helper?” EXPERTISE Predictably, most of Analytics’ work involves supporting the charity’s Caring Services. But their expertise is also used to help tackle problems and support projects in virtually every other area of the charity. Recently they have been supporting Community Involvement (through work on Marie Curie Helper) and Major Gifts Fundraising (providing detailed plans for how we would evaluate the impact of a service for major donors). While figures and statistics are vitally important to the team, Michael is quick to point out that their contribution goes way beyond number crunching. “I wouldn’t characterise our work as

being entirely quantitative,” Michael said. “The analytics team does a wide spectrum of things. That includes very technical work such as generating and analysing reports from the Patient Connect system at one end to strategic work summarising evidence for policymakers at the other.” EVALUATING Evaluating the charity’s services falls somewhere between the two, and is a crucially important part of the team’s remit. “Service evaluations are about producing something that says ‘this is the impact our service is having’. We identify what’s working well, what could be improved and what could be replicated elsewhere. We combine lots of data, both quantitative (numbers) and qualitative (often from interviews or focus groups). “For example, surveys of staff and patients might include questions that collect quantitative data, such as a satisfaction score on a scale, as well as questions that collect qualitative data, such as a written answer to an open question.” The team will also drill down into detailed data to find out where a Marie Curie service is working well, and where problems might be occurring. “If we are able to shed light on where and why these things are happening, we can give our operational colleagues the information

they need to take action. This sort of information is important when – for example - we are looking at unfilled hours – occasions when we are unable to get a nurse to a patient - in the Marie Curie Nursing Service.” For Analytics, presenting data well is just as important as the data being presented. Michael’s desk sports a sign quoting information design guru Edward Tufte: “If something is confusing, don’t blame your victim – the audience – instead, fix the design.” SPREADSHEET “Almost nobody outside our team wants to see a 20 tab spreadsheet. We work hard to present data in a visual manner, with coloured indicators of where things are going particularly well or badly, and trend lines to show if things are getting better or worse.” Michael said. The Analytics team was closely involved in two recent strategic projects – the huge Nuffield Trust research study of the impact of the Marie Curie Nursing Service and the new End of Life Care Atlas (which shows detailed end of life care statistics for each part of the UK). “Both projects enable us to make data on end of life care more widely available so that people can make better decisions about commissioning services,” Michael said. “In the Nuffield Trust study, we could

measure, for the first time, the impact that the Nursing Service has on where people die and how much time they spend in hospital. We were also able to drill down into the data to find that, for example, the service had a bigger impact on patients who don’t have cancer than on cancer patients.” Michael foresees opportunities for more and better use of data in the future STUDY “The Nuffield Trust study – where we used NHS records and Marie Curie data – showed how we could link data sets together both to understand our patients better, and to get better measures of impact. There is more potential there. We are looking at how we could carry out evaluations of big, wholesystem service interventions, joining up datasets in a Nuffield-like manner,” he said. “We are also improving the way we produce reports about Marie Curie Nursing Service activity for commissioners. Ultimately we want to focus our efforts on doing the analysis that will support the charity to achieve its goals. This means working hard to understand what different teams and projects are trying to achieve, so that we can provide well-presented data and analysis that helps them to meet their objectives.” • See more of the team’s work at mariecurie. org.uk/atlas mariecurie.org.uk/impact


16

MAY 2013

Stormy start for Mull fundraisers Fundraising Group Development Manager David Grout and Community Fundraiser Vonnie Carson took a stormy trip to Scotland’s Inner Hebrides to help launch Marie Curie’s new Mull and Iona Fundraising Group. They braved ferry delays and cancellations to meet members of the group, and Marie Curie Nurse Louise Thomas, who lives and works on the tiny islands. “This is our most remote fundraising group – although we plan to start one in Orkney in the very near future,” Vonnie said. “Getting to the island was an adventure – I got the only ferry that sailed that day, and we struggled to get into the tiny fjord. Poor David’s ferry got cancelled, so he did a shorter crossing that added lots to his land journey. “We met the group – and Marie Curie Nurse Louise Thomas – at the hospital in horrendous weather. They are brilliant – really keen to publicise the work of Marie Curie on the island and to raise money for us.

‘I wouldn’t want to be anywhere else’ “We toasted the new group with some nonalcoholic fizz (since it was 10am) and had some celebration cake too.” The group recently held its first Great Daffodil Appeal collection in Tobermory (seen on the BBC children’s programme Balmory) and raised over £500.

Above: Members of the new Mull group Flora Corbett, Louise Thomas and Shiona Finlayson with Community Fundraiser Vonnie Carson. Left: Carsaig Arches on Mull

Louise Thomas has been the Marie Curie Nurse on the Isle of Mull for two years. “Nursing on an island is completely different from working on the mainland,” she said. “Everybody knows everybody – and that can be a benefit, but also difficult at times. “That’s when your professionalism comes in. As a Marie Curie Nurse, whether I am on and island or on the mainland, you have to build up a relationship very quickly with patients. All Marie Curie Nurses are trained to do this. “You might know someone to say hello to in the street, but being involved with someone at that time in their life is very different, very much a privilege and very special. I know all the district nurses and GPs on first-name terms. They are used to dealing with terminally ill patients themselves. But the Marie Curie Nurses can support them by giving people the choice to remain at home with their families and loved ones. “Mull is a big island, and some places you go to can be quite remote. But I love it – I wouldn’t want to be anywhere else. It is a fabulous place to work. “My mother died of breast cancer. She had care from Macmillan, so I know what it means to have support, and that is why I joined Marie Curie. Having that care and support, and being told that it’s ok to feel what you feel is so important. I want to be able to make other people feel that way - It’s wonderful to give something back.”

Children show off their mini pots Thousands of children across the UK have taken part in Marie Curie Cancer Care’s Mini Pots of Care event. Participants were challenged to plant a daffodil bulb and care for it, and to decorate their plant pot for a national and regional competition. Community Fundraising Development Fundraiser Jessica Sessions said: “Mini Pots of Care is popular with children and teachers – schools love it, and we’re also getting lots of entries from Cubs and Brownies. “We’re looking forward to picking national winners – and we are

about to start recruiting schools and organisations to start growing their daffodils in autumn.” From Crossland Moore Beaver Scouts: We are Beavers As you can see We raised lots of money For Marie Curie We planted a bulb And watched it grow We collected loose change And made lots of dough

Crossland Moore Beaver Scouts with their Mini Pots


MAY 2013

Marie Curie supporters in Devon abseiled more than 100 feet from Meldon Viaduct, near Oakhampton. A total of 59 people took part in the event, and £12,400 was pledged in support of the charity. Regional Events Manager (Wales and the West) Jon Duckham said: “It was a great day’s fundraising. It was bitterly cold, but a fantastic venue – a big Victorian viaduct on the edge of Dartmoor. It was the first time we had used it, and the views are spectacular. To get onto the bridge, you go under the bridge, up a stanchion, up a ladder (protected by a rope) and walk inside the structure to the abseil spot.”

Pictured (l-r) are Ranjana Sengupta, Peter Lee, Arun Sharma and Corinne Pluchino

teams which has been invaluable. We are now putting plans in place to ensure we keep up to date with new trends in corporate giving and can offer imaginative and innovative partnerships in the future. “For example, we are currently reviewing our corporate volunteering strategy so we can use the professional skills and experiences of our partners

more extensively to help deliver the strategic plan. We are also going to test new ways to build relationships and secure support from corporate organisations. “The Regional Corporate Development Managers have also had a very busy year and have secured some great partnerships for the next 12 months.”

To give your thoughts on strategy and respond to the charity’s survey, visit mariecurie.org.uk/plan17 These pages are available to all staff and volunteers with access to the internet (you do not need a Marie Curie computer or account). You can also respond by emailing strategy@mariecurie.org.uk Or write to Imelda Redmond at Marie Curie Cancer Care – Strategy, 89 Albert Embankment, London, SE1 7TP

HA VE YO UR

Run of hits for Corporate Development

Have your say

TS T GHIGH OU S TH IN

Marie Curie staff and volunteers have been responding to the charity’s consultation on the charity’s strategy for 2014-17. Director of Policy and Public Affairs Imelda Redmond – who is leading development of the plan has received both online and paper responses. “We have re ceive d a good number of thoughtful contributions from staff across the charity,” she said. “There is still time to send us your contribution – but we do need it quickly. “We want to know what you think is the best way to help terminally ill people and their families – and what you think Marie Curie’s role should be in this. Please send us your thoughts. There is also an online survey. “ We a re a l s o e n c o u r a g i n g managers to discuss strategy at their team meetings, using the Managers’ Pack, which you can find online.” Some of the 23 events at which staff and volunteers can contribute to the plan have taken place in Belfast, Devon, Wales, Liverpool, London and Newcastle. Further events are planned throughout May. Delegates at the Marie Curiee Leaders’ Summit on 2 May will alsoo be discussing strategy.

• Meldon Viaduct was completed in October 1874 to carry the London and South Western Railway’s Lydford-Okehampton railway line. It is one of only two examples of a wrought iron truss girder viaduct in Britain and is protected as a Scheduled Monument.

Marie Curie’s new partnerships with EDF and Rockspring (reported on pages 5 and 7) follow a series of successes from the Corporate Development team. Major national partnerships won over the financial year include Text Santa 2012 (£916,000 in one year), Superdrug (£750,000 over two years), and Roadchef (£125,000 for one year). Other organisations which are now supporting Marie Curie thanks to the team’s efforts include the HSBC Graduates Committee and Hill Dickinson. Head of Corporate Development Corinne Pluchino said: “The team has worked incredibly hard over the last year and is delighted to have secured such a diverse range of partnerships. We have also had great support from our colleagues in other

Colleagues have their say on strategy

SA Y

BIG DROP FOR DEVON SUPPORTERS

17


18

MAY 2013

NURSES TREATED TO MAKEOVER Shirley Spark, 30, is based at the Marie Curie Hospice, Glasgow.

Three Marie Curie Nurses were featured in the Daily Record having a glamorous makeover and being treated to a fabulous new outfit to keep, courtesy of Next. The feature helped publicise the Great Daffodil Appeal – and appealed to readers to give a donation and wear a daffodil pin.

Anne-Marie Gray is a Marie Curie Nurse who works in patients’ homes. She is based in Lanarkshire. “I go into patients’ houses to give families a bit of a rest and to make sure the patient is always comfortable and pain-free,” she said. “It’s a really rewarding job and, after each shift, I really feel like I’ve done something worthwhile. “I work night shifts so I don’t get the chance to dress up. My new look is such a big change. “I never wear dresses, so it’s nice to remember that I’ve actually got Anne-Marie wears: floral print a pair of legs. It’s my daughter’s jacket, navy dress, nude shoes, birthday soon, now I’ve got necklace. All from Next. something nice to wear.”

“Patients are admitted for various reasons,” she said. “They might have had an infection, or need a blood transfusion, and we just try to make their quality of life as good as it can be, for the remaining period of their life. “We tend to see people coming in and out of the hospice, and we build up strong relationships with families too. “I feel like I’m always in my work uniform, and I never wear heels, or put on makeup, or do my hair. It’s been a real treat getting a makeover, and I love my new outfit, especially the trousers - I’ve been looking for a pair like this for ages.”

Juliana Whitelaw is a Marie Curie community nurse based in Glasgow. She said: “My job helps patients to get back home from hospital quicker. The fasttrack service we provide means that patients who’ve had treatment in hospital, but would rather be home with their families for the remaining period of their lives, can get back home before a formal care package is put in place for them. My job is really satisfying because I get to know patients and their families. “I’m in my comfort zone when I’m wearing jeans, a T-shirt and trainers, so this is totally different from what I’d normally wear. It’s lovely, though, and the shoes are very elegant Shirley wears: floral top, navy without being too high to walk in.” trousers, navy shoes, necklace. All from Next.

Juliana wears: pink dress, nude shoes, necklace. All from Next.

HSBC art event benefits our work

(l-r) Account Manager Meaghan Annear, Senior Account Manager Lucy Caslon and Account Manager Jenny Anderton with some of the art on display

Marie Curie Cancer Care benefited from Art on the Wharf – a new event organised as part of the charity’s relationship with HSBC. More than 80 supporters attended the private auction at HSBC’s office in Canary Wharf, London. Funds raised were through ticket sales, sale of art pieces and donations for daffodils offered by the HSBC graduate committee. Corporate Events Manager Gemma Howell said: “We had some really nice pieces – a wide range including sculptures, modern pieces and Picasso lithographs. Guests also had a rare opportunity to view HSBC’s private art collection. “It was an important landmark in our ongoing relationship with HSBC. We are now looking forward to next year’s event, which will be bigger and better.”


MAY 2013

19

seconds with... Edward Finnian Cloherty was born on 16 February at 9.25pm. He weighed in at 7lb 11oz. His proud parents are Media, Public Relations and Campaigns Manager Annette Cloherty and husband Mike.

Hatched and matched is Marie Curie rie People’s spot for your wedding, civil vil partnership and new baby photos. If you’re a newlywed, or a proud parent, nt, we’d love to see your photos. Please ase send us up to three (maximum) high gh resolution (300dpi+) Jpeg or Tiff files les by email only (don’t send us your ur precious prints). For identification on purposes, it would help if you could uld ensure the filename of the photo oto matches the subject’s name.

Julie Hughes is Marie Curie’s Head of Quality and Compliance.

Manager at the Marie Curie Shop in Cregagh Road, Belfast Nikki Hamilton on gave birth to a beautiful baby boy on 21 February. Taylor Hamilton weighed in at 7lb 8oz.

Mascots head for the hills Mascots from Marie Curie’s Charity of the Year partners joined Daffy the daffodil on Newcastle beach, County Down. They were launching the charity’s new Slieve to Slieve Mountain Challenge, which

takes place on 8 June. At the start line for the event were Chewits’ Chewie the Chewitsauras, the Irish Football Association’s Footy, Tayto Crisps’ Mr Tayto and Marie Curie’s Daffy

The mascots were encouraging other businesses to join them and sign up in teams or as individuals. • For more details see mariecurie.org.uk/ mountain or call 0845 052 4184.

Q: How long have you worked for Marie Curie? M A: 13 weeks. A Q: What did you do before? A: I was a senior manager in NHS A community Services. Q: What are the three most important aspects of your job? A: Quality, compliance, safety and A clinical effectiveness. Q: What’s your typical day? A: Train from Lichfield to London, A Tube to Vauxhall, switch on PC, T coffee. One-to-one with the Boss (Ruth Liley), then a mix of meetings; preparing reports; getting new HealthAssure system set up; building the quality agenda. One mile walk to hotel, some more reading and PC work before dinner, then Zzzz. Q: What do you do when you’re not at work? A: Spend time with my husband, my grown up family, friends and walking the dog. Q: When was the last time you laughed? A: At my husband this morning who was pretending to be in the programme Wanted Down Under by flicking a laminated sheet around on which he had written ‘retire’ on one side and ‘go to work’ on the other, trying to decide if he should go to work or retire, go to work or retire. Big decision (need to see the programme to get it). Q: What makes you happy? A: Climbing a hill or mountain and just looking for miles around. Q: What makes you sad? A: When one of my family are sad/ upset/worried. Q: What did you want to be when you grew up? A: A dentist. Q. What’s your favourite pudding? Bread and butter. Q: What were your favourite childhood TV programmes? A: Anne of Green Gables. Q: Tell us a fascinating fact about yourself. A: I am a Queen’s Nurse (not many of us around). Q: Which five people, alive or dead, would you like to invite to dinner? A: Billy Connelly; Bill Clinton; Stella Rimmington (Previously Head of MI5); Rod Stewart; Richard Branson.


Care for a cuppa? Every ccuppa and slice of cake will help us nurse someone with a terminal illness in your neighbourhood.

June and July 2013 Get your free fundraising pack now –

0845 052 4184 or visit mariecurie.org.uk/teaparty call

@mariecurieuk Charity reg no. 207994 (England & Wales), SC038731 (Scotland) Q923i

Charity reg no. 207994 (England & Wales), SC038731 (Scotland) S041

MarieCurieUK


Marie Curie People May 2013