CA News: August 2019

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August 2019 Welcome to the SYBND Cancer Alliance’s newsletter Our monthly focus on the people who make the Cancer Alliance

WELCOME WORD...

Chris Hicks – your typical bloke before cancer (right) and after cancer (left)

Chris Hicks – your typical bloke thinks that living with cancer needs to be talked about more. Chris is 31 years old, he’s a born and bred Yorkshire lad, and has lived in Sheffield all his life. He has enjoyed a varied career that included working with his father on a market stall in his youth, office work, being a carer, and even a tribute performer! When Chris was 24 he was diagnosed with bladder cancer, and although successfully treated, he is living with the threat of his cancer returning. He heard a radio interview about our project ‘Cancer: a picture tells a thousand words’ and decided the Cancer Alliance was the perfect place to share his experience. This edition sees Chris introduce CA News: “Welcome to CA News, our monthly newsletter. The Cancer Alliance is, albeit relatively new to me,

Chris Hicks, Lay Representative and Deputy Chair of the Communication and Engagement Steering Group

committed to engaging people like me! I cannot applaud its ambition and drive enough. Cancer doesn’t discriminate, and in my new role as Patient Representative and Vice Chair of the SYBND Communications and Engagement steering group, I am more than happy to help raise awareness of the project and great work we’ve got under way – as well as challenging the system. I want to encourage more people to engage and speak about their experiences. I firmly believe it’s good to open up about our experiences and cancer is one subject we should never shy away. We are continually looking for positive stories, news and views from across the Alliance, so do send us what you’d like to feature and any feedback. We hope you enjoy the read.”

Please provide any feedback or ideas for future items to feature to: Sybndcancer.alliance@nhs.net


NEWS

MAJOR ORAL CANCER PROJECT HEADS TO BANGLADESH One of Bangladesh’s leading malignancies is oral cancer. Bangladesh has one of the highest mortality rates in the world due to oral cancer. Around 16,000 deaths per year are attributable to oral cancer and every year at least 14,000 new cases are detected. One of the main reasons is the prevalent chewing of Betel quid, a form of tobacco, that is a wide spread tradition, culturally accepted and therefore encouraged in these communities. The Betel quid itself consists of areca nut, betel leaf, catechu, zarda and slaked lime. There are also high rates of smoking cigarettes, bidi, and hookah. Pair these factors with the use of alcohol and general poor nutrition as

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a result of poor socioeconomic conditions, lack of awareness of the types of health risks that cause oral cancer, illiteracy and lack of infrastructure to tackle oral cancer are all major factors which play into these sky high rates. Dr Muzzamill Nusrath, Head and Neck CDG Chair, in collaboration with the founding president of Bangladesh Oral Cancer Society, Prof Motiur Rahman, will be travelling to Bangladesh in September through to December to host free oral cancer camps in Khulna District villages. Dr Nasrath and Prof Rahman will go these villages with equipment to diagnose oral cancer. The camp will also raise awareness of oral cancer, importance

of avoiding Betel Quid, smoking cessation, teach the importance good oral hygiene and nutrition all in hopes of preventing cancer. The aim of the camp will also hope to diagnose cases by taking biopsies. If the test comes back positive it will be arranged the patient receives treatment for their cancer in the Government Hospital Cancer Centre. Many of the patients diagnosed are on very low wages but are expected to be the bread winners for their families. Therefore the diagnosis of advanced oral cancer proves to be devastating to the family, not only is the patient fighting for their life but his family suffers enormously as they

are dependent on the wage to survive. Because of this, the workers in the cancer camp aim to provide financial assistance hopefully giving support to the family during this difficult time. The patient will also be given much needed medication for pain control hopefully giving a better quality of life. The project hopes to raise awareness not just for the patients in the cancer camps, but also the government. The goal is to stop the sale of these chewable, and highly addictive tobacco products, change culture amongst the villages and provide important education about cancer risks, signs and symptoms.


FEATURE

YOUR ROLE IN THE CANCER ALLIANCE

In this issue we speak to Claire Pendlebury, Teenage Cancer Trust (TCT) Lead Nurse at Weston Park Hospital Tell us about yourself I was born in Altrincham, Cheshire as the oldest of four children, my Dad was a butcher and my Mum was a nurse. I started my nurse training in Alder Hey Children’s Hospital in Liverpool in 1982 and after qualifying I worked at Addenbrooks Hospital in Cambridge. I established and developed three Clinical Nurse Specialist services around the North of England from 1990 until 2007, when I took a post as a Skin Cancer Specialist Nurse for around nine years. Then I applied for the Lead Nurse position in the Teenage Cancer Unit at Weston Park Hospital and thankfully, I was successful! What does your job involve? My job as Lead Nurse for the TCT Teenage Cancer Unit in Weston Park involves leading a team of people who deliver specialist care to teenagers and young adults with cancer in South Yorkshire and Bassetlaw. Our priority is to support young people by providing appropriate psychological, emotional and practical care as well as the cancer care that they need. This will enable them to go through their cancer journey, hopefully be cured and take their place as well rounded and adjusted adults in the future. What do you do? My job is focused on leadership; I lead the team and make sure we have the right people, who are educated properly and are in place to deliver the service. My role is mainly strategically focused however I do have some clinical hours. I will see patients when they come to the hospital on the wards and in outpatients, I also spend a lot of time in the teenage cancer unit. My team is very varied, we have a clinical nurse specialist, two youth support coordinators and we work closely with social workers

Claire Pendlebury, Teenage Cancer Trust (TCT) Lead Nurse at Weston Park Hospital from CLIC Sargent and psychology colleagues. I have been undertaking a year long Leadership Scholarship with the Florence Nightingale Foundation. The Florence Nightingale Foundation is a charitable foundation that focusses on providing education and sharing knowledge amongst nurses about clinical excellence and leadership. We have spent a day in Westminster, two days in training focusing on presence, power and influence, and a residential about leadership. I take responsibility for connecting with leadership opportunities

within my own organisations and others, which lead me to getting more actively involved in the Cancer Alliance. I attend joint commissioning meetings at the local council and have shadowing opportunities arranged for our CCG. My mentor is the Chief Nurse at Addenbrookes Hospital, where I started my career. She will be my professional mentor for the year and beyond which is a huge asset for my development. When my scholarship finishes in March 2020, I will be publishing my quality improvement plans looking at the provision of community palliative care for

16 and 17 year olds – so stay tuned! How is your work helping the Cancer Alliance? My role is to represent the teenage and young adult service for the Cancer Alliance, we are currently undertaking a service review which will be very significant for the Alliance. A big benefit is the opportunity to network and communicate with people, there are so many connection opportunities and it’s fantastic to be a part of it. For more information please contact Claire at Claire. Pendlebury@sth.nhs.uk

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NEWS

ADVANCING A NURSING CAREER WITH ACADEMIC STUDY

Lydia Briggs, Macmillan Living with and Beyond Cancer Project Manager Lydia Briggs qualified as a registered nurse in 2015, and has since worked on a number of wards mainly around cancer specialities. Around 1.5 years after qualifying, she applied for and was awarded a scholarship to study for a Masters in Research Methods. After spending time understanding patients’ cancer experiences and the complexity of supporting an individual following their diagnosis and treatment, Lydia focused her Masters study on understanding the needs of people with breast cancer. Her particular interest was on Holistic Needs Assessments to help support them. Following completion of her Masters, Lydia applied for a PhD scholarship, and is now in her third year, undertaking a study focused on Holistic Needs Assessments, how they are implemented and how they make a difference to people with cancer. Lydia has maintained her clinical practice throughout her studies, and is still gaining vital experience in working directly with patients in a nursing capacity. In addition to this, Lydia is also a Project Manager for Living with and Beyond Cancer

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LEARN & SHARE: based in Doncaster and Bassetlaw Teaching Hospitals. She says; “I feel like I can really make a difference, because the knowledge I have from my research is very specific to that role. I have been given the chance to speak directly to patients for an extended amount of time, allowing me to ‘see it from the other side’, something I didn’t get chance to do with my

nursing role. Sometimes you might think you are doing something right, however research can point you in a different direction and say there are better ways to do things. I have found the education very accessible; I have been well supported throughout by my colleagues and through scholarships have found the means of funding my education. There are so many paths you can go down as a nurse, the options are there for you to take whether it is specialising, managerial, research, the possibilities are endless. By doing my research, I have a great opportunity to disseminate my findings to people across the country and prove that what I am researching has a positive effect for patients, I’d hope can make a real difference to many people with cancer as possible. Once I have completed my PhD I can realise my goal of becoming a Nurse Consultant Professor, where I can have both research and clinical components to my role and be perfectly placed to have the biggest impact to change practice.” For more information please contact Lydia Briggs at lydia.briggs@nhs.net


FEATURE

A WEEK IN THE LIFE OF…

PAUL HEMINGWAY

Paul is Head of Communications and Engagement, NHS Doncaster CCG Background – where are you from and what brought you to your current role? I’ll have to admit I’m not a Donny lad. In fact, I’m not from South Yorkshire either but I could pass as a Barnsley lad due to my accent! I’m from a small town in West Yorkshire called Cleckheaton, near Leeds and live with my wife and two young boys, Elliot, 8 and Dexter, 4. I’ve worked in the NHS for the last five years and for most of this time worked at NHS England, leading on communications and engagement for nursing and midwifery. In October 2018 I made a fantastic move to join NHS Doncaster CCG as their Head of Communications and Engagement and must admit it has been one of the best decisions I’ve ever made. Is there such a thing as ‘a week in the life of…’ for you? In short, no! There’s always a key focus and drive of what’s taking place this week, ensuring we communicate and engage with patients, public, stakeholders and partners on a regular basis, but what we communicate can change rapidly! Routine and forward planning is good and we try and strive for this. But in the world of comms and engagement, things are never that straight forward! What does your role involve? I lead a team of three at Doncaster CCG to ensure we communicate and engage with patients, members of the public, key partners and stakeholders locally, regionally and on some occasions, nationally. I’m not one for blowing my own trumpet but recently, my team’s proactive efforts and approach to communications and engagement was recognised by NHS England in the latest CCG Improvement and

of this on your own, even at place level. But by working across boundaries, sharing your ideas and knowledge with other like-minded folk means we can create change and help spread the good further and faster. It’s vital that we all work together in the world of comms and engagement and sharing patient stories across the cancer alliance is important – the Lung Health Check scheme is a prime example of this.

Paul Hemingway, Head of Communications and Engagement, NHS Doncaster CCG Assessment Framework. For our approach to patient and public engagement, we moved from ‘Amber’ requires improvement in 2017-18 to ‘Green Star’ in 2018-19. This required a lot of hard work but it’s reassuring to know that we are doing the right thing! One of the latest campaigns we are leading on is the Targeted Lung Health Check scheme to detect lung cancer earlier as well as a range of other comorbidities such as asthma and COPD. This is a fantastic piece of work to not only support and reassure local people to attend and have a lung health check, but more so to detect any instances where lung cancer is developing to try and improve outcomes for the people we serve. What are your high points and challenges? Despite there being many challenges in the world of comms and engagement, such as deadlines, conflicting priorities and ensuring we communicate and engage with people at the right time

and right place, there’s so many highs that keep me going. I’m fortunate in Doncaster to work with a great bunch of people – in comms, engagement and beyond. Everyone is passionate about doing the right thing and going the extra mile. The fact that Doncaster CCG has achieved ‘Outstanding’ status for the last three years is a good example of how we all work together to do the best for our patients. We all know that resources in the NHS are tight – and we have to do more with less, but in my role you can be creative, innovative and think outside the box. And that’s just one of the things I relish – if it doesn’t work, try something different! What does the Cancer Alliance mean to you? For me, the Cancer Alliance is vital. It’s about people, sharing resources, knowledge and expertise to improve awareness raising of screening, detection and improving cancer care pathways. It’s hard to do all

What do you enjoy out of work? Even though my job is quite demanding, I’m always keen to ensure I take time out and spend it with my wife and boys. I enjoy walking and swimming and we do our best to go somewhere new each weekend. That said, there’s always a few hours when I’m on Facebook and Twitter sharing posts and putting Doncaster on the map! If you had three wishes, what would they be? Quite simply, in the world of comms and engagement, they’d be: 1. Encourage as many people as possible in NHS Doncaster CCG to create a social media account and share our work with their friends and colleagues. To be fair, a lot of staff do, which is brilliant, but if everyone did, just think of the reach we’d achieve locally! 2. The Targeted Lung Health check scheme works as well as we think it should. It’s early days and planning is going well – but it would be great so see a significant number of eligible people take up the free check. 3. A bigger team! Seriously though, my team are fantastic, which is one of the reasons we’ve achieved ‘Green Star’. But just think how much more we could do…

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NEWS

STUDENT CAMPAIGN ENCOURAGES YOUNG CARERS TO HAVE THEIR SAY

Final projects for the young carers work

Mia Fidment, Student at UTC in Sheffield Two students from The University Technical College in Sheffield have worked with us to develop campaign materials to encourage young carers to come forward; having their say on improving cancer care and services. Mia Bellamy and Mia Fidment volunteered to develop the campaign materials as part of their Media Diploma at the college, based on Shoreham Street in Sheffield. They received a briefing for their ‘target audience’ from the Cancer Alliance and we worked with them to develop their approach. Julia Jessop, Programme Director for the South

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Yorkshire, Bassetlaw and North Derbyshire Cancer Alliance, said: “The girls have come up some really impactful ideas. Our aim was to engage with students at the college and work with them as part of their course. Using their ideas and our insight, we’ve developed materials to target young carers, a relatively difficult group to reach because of busy lives and competing priorities. “We want to thank the college and the girls for their hard work. We believe it’s important to raise awareness of the Alliance to different groups of people and hear everybody’s views on how and when we can improve and develop cancer care and

services. We hope it means we’ll be able to reach even more people, representing people from all backgrounds and with varied experiences and skill sets.” The ideas developed as part of the young carers’ campaign will be used as part of the launch of Alliance’s membership scheme ‘Let’s Talk Cancer’, later this year. Mia Bellamy added: “We’ve been really excited to work with the Cancer Alliance. It feels like we can really make a difference with our ideas and they’ve really listened us. We’re looking forward to finishing the project, which is part of our Media and Photography Diploma and hope that we not

only get a really good mark going forward but that we can improve the vital engagement with the Cancer Alliance with this harder to reach group of people.” Mia Fidment commented: “We didn’t know about the work of the Cancer Alliance before they came to speak to our class and we knew we wanted to do something to make a difference. I had no idea that young people could influence how we deliver cancer care and when they said that carers were a core group of people they wanted to engage with we wanted to combine the two.” For more information email sybndcancer.alliance@nhs.net


FEATURE

FANCYING JOINING US FOR A CURRY? At the SYBND Cancer Alliance, we believe that relationships are key to getting real transformation embedded and improving things for our patients and all our colleagues in cancer. Nothing beats a good curry and a little time away from work to encourage better relationships and we’ve linked this to an idea that came from one of the consultants at the MDT effectiveness early in July. Therefore, we would like to extend an open invitation to all to a Cancer Alliance Curry Night on Thursday, 5 September. Please let us know if you would like to join us. The venue will be confirmed once we know numbers but initially we’re looking at Akbar’s (Meadow Bank Road, Rotherham S61 2NF). We would estimate that the restaurant would be booked for 7pm.

MDT EFFECTIVENESS WORK: PROGRESS REPORT Number of patients scheduled to be discussed as part of the observed MDTs (9):

KEY FACTS:

The MDT Effectiveness work led by Georgia Thompson as part of the High Quality Service workstream of the core Cancer Alliance PMO, is progressing at pace. Since the event at The Source, in January, we went out to expressions of interest

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from MDTs keen to be early adopters of change. We have been observing the nine MDTs that came forward and collating the results. The findings were presented at the MDT Effectiveness steering group in July. Good practice was noted from across the region.

275 Discussed:

Average length of discussion:

8 1

MINS

MAXIMUM

MIN

MINIMUM

Including, trial opportunities being raised, holistic needs being considered and discussions around additional care needs, such as mental health issues being held. The Worklife Company have been appointed, following a competitive quote process, to work with the

Largest patient list discussed at MDT:

58 54 (centralised)

(DGH based)

core team and this first wave of MDTs to understand the organisational development needed to put the changes into place. The next meeting of the MDT Effectiveness Steering Group is on Friday, 6 September. For those wishing to find out more about the work, please email.

Please provide any feedback or ideas for future items to feature to: Sybndcancer.alliance@nhs.net