Can cancer ever be a good thing?

Post by Fiona Menger, Research Associate, Institute of Health and Society, Newcastle University

Dr Menger blogs about how she was inspired early in her career by Times Journalist John Diamond and has recently returned to his writing while working on a study on the positive consequences of having cancer.

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John Diamond, author of “C, Because cowards get cancer too”

As a newly qualified speech and language therapist in the late 90s, I was an avid reader of Times journalist John Diamond’s weekly columns on his experiences of being treated for head and neck cancer. Diamond was one of the UK’s first ‘cancer columnists’, writing about his reaction to his diagnosis and treatment, and the correspondence he received from his thousands of concerned readers. His columns became two books, a documentary, a play, a TV drama, and were followed by many other cancer survivors writing about their experiences in the media or on personal blogging platforms.

John Diamond conveyed to his readers not only that it was ok to write about personal experiences of cancer, but that it was positive to share his story. He was adamant that he was neither brave nor strong, but that he was, in his own words, ‘a coward’, a passenger on a journey where he had very limited control. For me, John’s strength lay in his writing and his reflection. He was simultaneously eloquent and rude. Each day when the radiologist would ask, “How are you today?” he would grumpily reply, “Well, since you ask, I’ve got cancer.” I loved that about him. He was honest and funny and had a natural ability to convey the serious level of crap he was living through. He also taught me a great deal about viewing care from a patient’s perspective, something I have tried to carry with me throughout my career.

I recently returned to John Diamond’s writing because, twenty plus years later, I find myself working on a head and neck cancer-related project with a focus on a phenomenon called post-traumatic growth. Around 20 years ago, psychologists began to investigate post-traumatic growth in survivors of traumatic experiences such as natural disasters or accidents, but more recently the concept has begun to receive attention within the cancer research community. The principle of post-traumatic growth is that a person can, over a period of months and sometimes years, come to perceive positive benefits as a result of their trauma (in this instance, cancer). It might mean, for example, that a person feels emotionally stronger, that they appreciate their life and relationships more, or that they feel they have renewed focus and direction. The researchers who coined the term report that to experience post-traumatic growth, a person must go through a process of rumination and reflection. They write that it is necessary to work through a period of recurrent thinking about the event with the aim of trying to make sense of what has happened, to problem solve and to reminisce. These were skills that John Diamond demonstrated in spades. In the final chapter of his book, ‘C – Because cowards get cancer too’, Diamond recounted a conversation with his wife, the chef and author Nigella Lawson:

‘It’s such a strange time, isn’t it?’ I said.

‘How so strange?’

‘Oh you know. Strange in that I’ve never felt more love for you than I have in the past year, that I’ve never appreciated you as much, nor the children. In a way I feel guilty that it should have taken this to do it, I suppose. But it is strange, isn’t it?’

For the first time, I found myself talking like this without resenting that it had taken cancer to teach me the basics, without resenting that there was part of me capable of talking like a 1950s women’s magazine article without blushing.

I still don’t believe that there is any sense in which the cancer has been a good thing but, well, it is strange, isn’t it?

Quote from: Diamond, J. C. Because cowards get cancer too. Vermillion. 1999

So, is there ever any sense in which cancer can be a good thing? Research across different types of cancer survivors suggests that post-traumatic growth is a common occurrence but that it doesn’t happen for everyone. There is also some limited evidence to suggest that people with cancer who experience higher degrees of post-traumatic growth may have better health-related quality of life. What we don’t understand is what helps or hinders people to experience these positive changes. This is what our project – “Life after Head and Neck Cancer” aims to determine. We plan to interview people who have finished treatment for head and neck cancer and have had time to reflect on their experiences. We will explore coping mechanisms, support systems and beliefs about the impact head and neck cancer has had on people’s lives. Why is it important to better understand post-traumatic growth? Well, if researchers can somehow identify and understand how people develop post-traumatic growth, this could inform the development of services to support people to have more positive outcomes after cancer.

This Sunday (2 June) marks National Cancer Survivors Day. We are hopeful that, if post-traumatic growth can in some way be encouraged and supported, more and more cancer survivors can live well following their experiences. This work is in its very early stages, but I am extremely proud to be part of it.

John Diamond died in 2001, following a recurrence of his throat cancer.



Figure image: reproduced with permission from: Diamond, J. Close encounters of an alternative kind. BMJ 2000; 321:1163

All articles posted on this blog give the views of the author(s), and not the position of Fuse, the Centre for Translational Research in Public Health; the five North East Universites in the Fuse collaboration, or funders.

Perseverance and Public Health: creating a cultural shift takes time

Guest post by Susan Jones, Research Associate, Teesside University

I spoke to a young woman the other day who had moved to North East England recently. She already had a little boy, just coming up 2 years old, and was now well on in her next pregnancy. Because I had been involved in evaluating babyClear© - an intervention to help support expectant mothers to stop smoking - I asked her whether the midwives had enquired if she smoked, (she doesn’t). “Oh yes”, she said, “they’re much more into keeping a close eye on you here”, as compared with the region where she lived before.

This buy-in by maternity staff, and the change to practice, is reflected in our paper, recently published in BMC Health Services Research (Jones et al., 2019)[1], in those Trusts that facilitated the intervention most successfully.

It is crucial, yet difficult, to answer questions about the effectiveness of initiatives like these. It takes time and perseverance t
o identify the questions, conduct the research and bring in the system and practice changes, which in turn support behaviour change in patients.

How do we go about answering questions about effectiveness of interventions designed to support people to change their behaviour and to become healthier?

It was in 2012, that the findings from interviews with midwives were first published (Beenstock et al., 2012)[2] and the search for new ways of embedding National Institute for Health and Clinical Excellence (NICE) Public Health Guidance 26 (2010)[3] more thoroughly, began. As a result, babyClear© was initially implemented across North East England from 2013 to 2015.

Fundamentally, interventions like babyClear© can be shown to be effective in certain circumstances (NICE, 2010; Bell et al., 2018)[4] but our latest paper found that these changes required specific contexts and cultures in the implementing organisation to maximise their effectiveness and potentially their sustainability and transferability.

These changes in staff practice and patient behaviour do not happen in isolation; the external context is important too and, in this case, the national context has become increasingly supportive.

For example, there have been a number of new pieces of legislation, guidance and reports during this time, all pushing in the same direction:

• Saving babies’ lives: reducing stillbirth and neonatal death: a care bundle (NHS England, O'Connor and Gould, 2014)[5]
• Tobacco Control Plan: Delivery Plan 2017 - 2022 (Department of Health and Social Care, 2018)[6]
• Hiding in Plain Sight; treating tobacco dependency in the NHS (Royal College of Physicians and Tobacco Advisory Group, 2018)[7]
• Not to mention ongoing lobbying from the Challenge Group (2018)[8], a coalition of likeminded, stop smoking, activist organisations, with their ‘Review of the Challenge’.

Clearly, there is an appetite to find solutions to the health problems that smoking causes; however, imposing regulation, without understanding and dealing with the causes, is never going to be hugely effective in a democracy like ours.

So what we see is a lot of different ‘scatter gun’ approaches all dedicated to the same aim – typical of lots of health and social interventions – but is this the best approach?

It is being recognised more and more that intervening in complex systems, such as the NHS, is both necessary and – at the same time – problematic. Largely, the problems come from a lack of understanding of the multiple complexities of the contexts and the effect of cultures upon outcomes. New ways of combining research methods are required to investigate these complex systems and find appropriate answers (Moore et al., 2014)[9]. Updated guidance from the Medical Research Council on evaluating complex interventions is being drafted as I write.

Fuse Complex Systems research programme

Only when the links – or active ingredients – between the different elements of an intervention are identified, and proper attention is given to the contexts and cultures surrounding it, will we be able to understand the necessary environment and resources for it to thrive, ensure its sustainability and maximise outcomes.

Our paper is one step in this direction but there is much more to do. Fuse has a Complex Systems research programme, because the researchers know how important it is. They will soon be publishing their plans for the future direction of their research on this topic.

This is an area where research and evaluation are moving fast, as they attempt to get to grips with the way health and public health are changing in the lives of staff and patients.

References: 

1. Jones, S. et al. (2019) What helped and hindered implementation of an intervention package to reduce smoking in pregnancy: process evaluation guided by normalization process theory. BMC Health Services Research. Available at: https://rdcu.be/bA4fK (Accessed: 20th May 2019).
2. Beenstock, J. et al. (2012) 'What helps and hinders midwives in engaging with pregnant women about stopping smoking? A cross-sectional survey of perceived implementation difficulties among midwives in the North East of England', Implementation Science, 7(1), p 1. 
3. National Institute for Health and Care Excellence (2010) Public health guidance 26: Quitting smoking in pregnancy and following childbirth. London: NICE. 
4. Bell, R. et al. (2018) Evaluation of a complex healthcare intervention to increase smoking cessation in pregnant women: interrupted time series analysis with economic evaluation. Tobacco Control. Available at: http://tobaccocontrol.bmj.com/content/early/2017/02/10/tobaccocontrol-2016-053476 (Accessed: 20th May 2019). 
5. NHS England, O'Connor, D. and Gould, D. (2014) Saving Babies Lives: reducing stillbirth and neonatal death: a care bundle. Available at: https://www.england.nhs.uk/wp-content/uploads/2016/03/saving-babies-lives-car-bundl.pdf (Accessed: 10th April 2019). 
6. Department of Health and Social Care (2018) Tobacco Control Plan: Delivery Plan 2017 - 2022. Available at: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/714365/tobacco-control-delivery-plan-2017-to-2022.pdf (Accessed: 20th May 2019). 
7. Royal College of Physicians and Tobacco Advisory Group (2018) Hiding in plain sight: Treating tobacco dependency in the NHS. Available at: https://www.rcplondon.ac.uk/projects/outputs/hiding-plain-sight-treating-tobacco-dependency-nhs (Accessed: 11th April 2019). 
8. Challenge Group (2018) Review of the challenge 2018. Available at: http://ash.org.uk/information-and-resources/reports-submissions/reports/smoking-in-pregnancy-challenge-group-review-of-the-challenge-2018/ (Accessed: 10th April 2019). 
9. Moore, G. et al. (2014) Process evaluation of complex interventions: UK Medical Research Council. Available at: https://mrc.ukri.org/documents/pdf/mrc-phsrn-process-evaluation-guidance-final/ (Accessed: 10th April 2019).

Image:

1. 'Smoking when pregnant' by johndavison883 via Flickr. Public Domain Mark 1.0.

The toxic mix of Universal Credit, austerity and widening inequalities

Concerns about the mental health impact of government reforms under austerity are growing and emerged in Universal Credit research commissioned by Gateshead Council which is soon to be published in BMJ Open[1].

 

Mandy Cheetham, Research Associate at Teesside University, posts on Mental Health Awareness Week.

The invitation to present the findings at Newcastle University’s recent conference on human rights, health and welfare made me reflect on the multiple ways in which Universal Credit drives inequalities and undermines claimants’ rights.

Panel members (Mandy, pictured furthest right)

Want, Disease, Ignorance, Squalor & Idleness: Beveridge’s 5 giants

As part of a panel discussion, I was struck by the powerful comments of my fellow panel members who framed the rising need for food banks as a failure of social security. They described the “uncomfortable truth” of food poverty, the “violence of austerity” and the need to start from a position of love and care, offering people dignified, not demeaning responses to crises.

The sense of exclusion, shame, embarrassment and stigma surrounding food insecurity and the use of foodbanks was clearly articulated by the Universal Credit claimants in the study we did in Gateshead and Newcastle. One participant with a long term health condition commented:

"I think the most degrading thing about Universal Credit was that I had to go to foodbanks. I couldn’t afford to eat" (Claimant interview)

Universal Credit claimants and staff supporting them recognised the political choices which undermine people’s basic rights to food and social security, which are fundamental to health and wellbeing.

"It seems to be government policy at the moment to punish people for being poor" (Staff interview)

It is hard to see these choices as accidental when Amber Rudd, the Secretary of State for Work and Pensions, acknowledges that the rise in food banks is at least in part due to the roll out of Universal Credit. It is brutal and unrelenting in its effects.

Last week, I attended a thought provoking seminar by Guy Standing (co-founder of the Basic Income Earth Network), who reflected on the benefits of securing a basic income for all and described his view of the modern giants blocking transformative progress, including precarity: creating ‘supplicants’ with no rights, asking for favours from friends, family and bureaucrats, reliant on charity with no sense of agency or freedom. 

Digital exclusion, delays, deductions, intensified work related requirements, arbitrary risk of sanctions and maladministration by the Department for Work and Pensions associated with Universal Credit, all combine to maintain the precarious existence of claimants, undermining their rights to financial and material security, and social inclusion required for health and wellbeing.

This is not new. In a paper entitled ‘First do no harm’, Barr et al (2016)[2], found the programme of reassessing people on disability benefits using the Work Capability Assessment was independently associated with an increase in suicides, self-reported mental health problems and antidepressant prescribing. The authors suggest that the policy may have had serious adverse consequences for mental health in England, which could outweigh any benefits that arise from moving people off disability benefits.

The four year welfare benefits freeze, austerity and implementation of Universal Credit is a toxic combination that has truly terrible consequences for those reliant on the state leaving people without enough money to fund the basics essential to participate in society. 

Piecemeal changes announced by government to phase out “unnecessarily long” three year sanctions under Universal Credit, for example, are welcome but do little to address the wider concerns raised about the continuing hardship which people experience on Universal Credit (Dwyer P. 2019)[3]. 

There are increasing calls for public health to respond in the face of mounting evidence of the harm to people’s physical and mental health which Universal Credit is causing. If government Ministers and policy makers were guided by the principles of “First Do No Harm”, it would be hard to see how the continued roll out of Universal Credit could be justified in the name of ‘welfare reform’. Public health needs to be at the forefront of efforts to address concerns about rising inequalities in different dimensions – income, work, mental and physical health, families and relationships, which were highlighted this week by the Institute for Fiscal Studies (Joyce and Xu 2019).

References:

1. Cheetham M, Wiseman A, Moffatt S, Addison M. (2019) The impact of Universal Credit in North East England: a qualitative study of claimants and support staff BMJ Open (in press).
2. Barr B, Taylor-Robinson D, Stuckler D, Loopstra R, Reeves A, Whitehead M. ‘First, do no harm’: are disability assessments associated with adverse trends in mental health? A longitudinal ecological study Journal of Epidemiology and Community Health, 70:339–345 http://dx.doi.org/10.1136/jech-2015-206209.
3. Dwyer P. [editor] (2019) Dealing with welfare conditionality, Bristol, The Policy Press. 
4. Joyce R. and Xu X. (2019) Inequalities in the twenty-first century: Introducing the Deaton Review, Institute for Fiscal Studies and Nuffield Foundation, London, UK https://www.ifs.org.uk/inequality/wp-content/uploads/2019/05/The-IFS-Deaton-Review-launch.pdf

Images:

1. Courtesy of Newcastle University Law School: https://twitter.com/NCLLawSchool/status/1121333821121671169
2. Courtesy of Ruth Norris (@ruthpnorris): https://twitter.com/ruthpnorris/status/1121512102437453830 
3. Courtesy of the Institute For Fiscal Studies: https://www.ifs.org.uk/inequality/chapter/briefing-note/

Why do some women continue to smoke when they are pregnant?

Guest post by Susan Jones, Research Associate, Teesside University

"I was 12 years old when I started to smoke. I wasn’t thinking long-term, about my future, about the adult world I would one day join … I just wanted to look cool among my peers, be accepted and act grown up. Then I really did grow up and I was still smoking. Then I became pregnant … and I was still smoking. I didn’t exactly choose to be a smoker when I was pregnant but here I am ... addicted and not really wanting to give it up, or even if I wanted to, I don’t think I could – even for my baby.

"My mam smoked when she was pregnant with me, and I’ve turned out all right; all my family smokes, all my friends smoke, my partner smokes too; in fact smoking is a part of all my close relationships, especially with my partner, we smoke together, it is part of how our relationship works."

"I feel guilty, oh so guilty, but I can’t, I really can’t give up – I simply do not have the confidence to do it. I know that ‘smoking is bad for my baby’; I care for my baby and don’t want to do anything that would cause harm, and I’m really looking after myself, eating well, not drinking any more. I’ve cut down but I hardly dare think about quitting smoking, how on earth would I cope? And my partner, he’s not willing to change his smoking habits, or at least he’s agreed he’ll just not breathe over me when he’s been smoking, but he’s not even prepared to cut down – all he does is tell me, you must quit for the sake of the baby." 

A composite from interviews with pregnant smokers and maternity staff.

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Smoking is highly addictive and habit forming; many people enjoy the feeling it brings too[1]. Nevertheless the damage from smoking to the developing baby is well documented and the high level of smoking in pregnancy is still a major public health concern[2]. The National Institute for Health and Care Excellence (NICE) Public Health Guidance 26 (2010)[3] sets out all the trial-based evidence relating to the activities health professionals should take to support pregnant women to quit smoking. BabyClear© is a programme that supports health professionals to implement NICE guidance and provides standard training for them in order to carry out the activities in the most effective ways[4].

When we evaluated the implementation of the babyClear© package during its roll-out across North East England, we found that, for healthcare practitioners to challenge smoking behaviour amongst pregnant women, there needs to be a whole support system in place for both the professionals and the women whose behaviour they seek to change[5].

We recently developed an animation, based on our findings, which you can watch here:

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South Tees Hospitals NHS Foundation Trust took part in the evaluation of the implementation of the babyClear© package and works closely with its local stop smoking service. As Joanna Feeney, the Smokefree NHS Strategic Manager, says:

"South Tees is a great example of how Stop Smoking Services and Maternity Services can work together to help support Pregnant women to have Smokefree Pregnancies. 

"Most women who smoke during their pregnancy may know that smoking is bad but they are not aware of all the risks to them or to baby, they are also not aware of the help and support that is available to quit, including treatments such as Nicotine Replacement Therapy. 

"Implementing advice and treatment as part of routine Maternal care that is continued outside of hospital with the Stop Smoking Service helps ensure that babies are given the best start in life. 

"Last year in South Tees there were 334 more babies born Smokefree compared to 2012, and this year following the great work done on the wards at James Cook University Hospital the numbers are continuing to reduce but we recognise that there is still more to be done to ensure that every baby is born smokefree."

The Maternity and Stop Smoking Services reviewed the referral pathway and developed an online referral system that not only makes it easier for midwives but increases the speed with which women are contacted and given an appointment with the Stop Smoking Service.

Image courtesy of South Tees Hospitals NHS Foundation Trust

The Stop Smoking Service provides regular feedback to Maternity on the outcomes of women referred, enabling Maternity to offer bespoke interventions to those women who do not engage with treatment.

A further example of how South Tees Hospitals NHS Foundation Trust has moved towards a whole support system and worked in close partnership with stop smoking services is an initiative they undertook last year to redecorate the entrance to their maternity unit using eye-catching posters with a strong, stop smoking message.

And now, a year on, Kay Branch, Consultant Public Health midwife, South Tees Hospitals NHS Foundation Trust says:

"We are still really proud to have led the way towards a smokefree Trust. Our staff have noticed a reduction in the presence of anyone smoking outside entrances. 

"We continue to work collaboratively with the local stop smoking service to ensure a streamlined service for women and their partners. Nicotine replacement therapy is available to all of our patients and is widely used across maternity. 

"Our smoking at time of delivery reflects our hard work and passion for smokefree families."

Maternity’s lead has inspired the whole Trust to implement a systematic approach to treating tobacco dependency with Maternity being the model ward.

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I would encourage you to take a look at the animation above and publications relating to the roll-out of the babyClear© intervention package across the North East region. Please do share them with commissioners and providers of services, but also your colleagues, family and friends and any pregnant smokers you know.

More information on our evaluation work can be found here on the Fuse website.

References:

1. Chamberlain, C., O'Mara-Eves, A., Porter, J., Coleman, T., Perlen, S. M. et al. (2017) Psychosocial interventions for supporting women to stop smoking in pregnancy. Cochrane Database of Systematic Reviews. Accessed on 18/03/19 at: https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD001055.pub5/epdf/full
2. Bauld, L., Graham, H., Sinclair, L., Flemming, K., Naughton, F. et al. (2017) Barriers to and facilitators of smoking cessation in pregnancy and following childbirth: literature review and qualitative study. Health Technology Assessment, 21(36). https://www.journalslibrary.nihr.ac.uk/hta/hta21360#/abstract
3. National Institute for Health and Care Excellence (2010) Quitting smoking in pregnancy and following childbirth: public health guidance 26. NICE: London https://www.nice.org.uk/guidance/ph26/resources/smoking-stopping-in-pregnancy-and-after-childbirth-pdf-1996240366789
4. Bell, R., Glinianaia, S. V., Van der Waal, Z., Close, A., Moloney, E., Jones, S., Araujo-Soares, V., Hamilton, S., Milne, E., Shucksmith, J., Vale, L., Willmore, M., White, M., Rushton, S. (2018) Evaluation of a complex healthcare intervention to increase smoking cessation in pregnant women: interrupted time series analysis with economic evaluation. Tobacco Control, 27: 1. Accessed on 18/03/19 at: http://tobaccocontrol.bmj.com/cgi/content/full/tobaccocontrol-2016-053476
5. Jones, S.E., Hamilton, S., Bell, R. Araújo-Soares, V., Glinianaia, S.V., Milne, E.M.G., White, M., Willmore, M., Shucksmith, J. What helped and hindered implementation of an enhanced package of measures to reduce smoking in pregnancy: process evaluation guided by Normalization Process Theory. BMC Health Services Research [In press]

Young people taking a stand for their #Right2Food

Guest post by Dr Pamela L Graham, Vice Chancellor’s Senior Research Fellow, Northumbria University

Image courtesy of Children's Future Food Inquiry via twitter 

“It’s time to act! It’s time this country gave every child the right to food!” Such a powerful statement. But, these aren’t the words of a politician addressing Parliament or a celebrity on a new mission to make a difference. These are the words of Corey - a 15-year-old, Young Food Ambassador who sat on a stage in Westminster and bravely told an audience about her experiences of food insecurity. As a carer for her disabled mum, Corey takes responsibility for making sure her family have access to food by collecting food parcels when needed and sharing her own meals to make sure there is enough food to go around.

This was just one account shared at the launch of the Children’s Future Food Inquiry report on 25 April 2019. As a researcher involved in work around food insecurity, I was invited to attend this event. I’ve been fortunate enough to attend lots of fantastic events on children’s food in recent years, but this one was by far the most thought-provoking.

The event attracted some high profile speakers, including Children’s Future Food Inquiry Ambassador, Dame Emma Thompson. She spoke passionately about the need for us as adults to listen to what children are saying about their circumstances and take action to make a change. Children and Families Minister, Nadhim Zahawi, also addressed the audience acknowledging the importance of children’s views. But then came what Dame Emma Thompson described as “the real VIPs” and six Young Food Ambassadors took to the stage and I was blown away!

Image courtesy of Dr Philippa Whitford via twitter 

I was struck by the confidence and clarity with which these young people spoke. They weren’t there telling their stories to gain sympathy; they meant business and were there to demand action. They gave accounts of parents who struggled to make ends meet, working yet still unable to attain a healthy diet. They questioned the motives of a society where unhealthy food is promoted to them through shiny promotions and easy access. They highlighted the stigma associated with food insecurity and the need to reduce this within food systems set up to support them. These young people know what they should be eating but have had enough of not being able to access it.

The young people highlighted policies and practices that hinder their access to healthy food. Policies and practices that were probably implemented by adults. As adults, I think we have a responsibility to use the knowledge, skills and resources we have to support young people to make a change, but this needs to be done with input from the young people who are affected by these changes.

Young Food Ambassadors talk about their experiences

A great example of the difference that can be made when children are listened to was described by Richard ‘Beef’ Frankland from Prospex Youth Centre (who stars in the film above). He talked about how the staff at the youth centre began providing toast and progressed to cooking full meals, all at the request of the young people. The young people are also growing herbs, trying new foods and learning about where their food comes from in response to their queries about why the vegetables being prepared for cooking at the youth centre are covered in soil. From research I’ve worked on previously around breakfast and holiday clubs, I know that Beef’s work is just one example of the difference school and community groups are making by listening to the needs of those they are working with.

I left the event wanting to do more. Reading the Children’s Future Food Inquiry report on the way home, I found that research I’ve been involved in with the Healthy Living lab at Northumbria University had been cited. It’s always nice to see your work cited, knowing it’s not filed away unread, but this occasion was bitter sweet. Children are still going hungry and missing out on valuable nutritious food so there’s still more work to do. Going forward, I’m keen to do more research around food insecurity involving young people and people like Beef, who know their communities and are committed to making a difference.