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“You don’t need to fight any battle alone – someone is ALWAYS there to support you while you’re fighting whatever battle you’re up against!” #Strongertogether

After many years of wanting to work within the Mental Health field, in September 2018, I finally enrolled at the University of Leeds, to study Mental Health Nursing. As I have been coming up to the end of my first year, I have been feeling more passionate than ever about wanting to raise as much awareness as possible around mental health and to raise money for a charity that I hold close to my heart… – so I could really end this academic year with a *BANG* !!! I sadly had to give up my position as a listening volunteer on the crisis hotlines with the Samaritans due to my study commitments, however this spurred me on to continue supporting them and to help make a difference in other ways. I am such an advocate for the Samaritans after volunteering with the them, as it really opened my eyes to the incredible support they offer. They will;

 “never tell you what to do, they are there to listen, with no judgement, no pressure, and they will help you work through what’s on your mind, for anyone who needs someone, 365 days a year, 24 hours a day. If you need any kind of emotional support, call or text them free from any phone 116 123, or email jo@samaritans.org”. (https://www.samaritans.org/).

So, this is the exact message that I wanted to promote;

 “You don’t need to fight any battle alone – someone is ALWAYS there to support you while you’re fighting whatever battle you’re up against”… especially when you think that they’re not.

Around 1 in 4 people will experience a mental health problem, yet the shame and silence can be as bad as the mental health problem itself – so it is so important to raise this awareness and for us to break this stigma. Since learning about mental health more and more at University, this is the message that I want people who are suffering with their mental health to hear, because we are always stronger together. I want to give a voice and fight the fight for the people who are struggling.

As mental health is not always something that you can see, this is something that I wanted to visibly portray as part of my campaign with images, to strengthen my message. Just because it can’t be seen,doesn’t mean that it’s not there, or that someone isn’t struggling. Someone with a mental illness can lead a full life, BUT may hide their suffering behind a mask and pretend that everything is okay. The photoshoot was done with help from two of my peers. The images of me with half of my face representing someone who on the surface appears well, and the other half of my face with hard hitting mental health messages; “depression, anxiety, panic, manic, suicidal, anger, trauma, low, self harm, shame and stigma”,  represent what may actually lie beneath. My campaign photos led to, my donations  doubling in less than half a day. My target was to raise £300, I am so grateful for all the donations and moral support that I have received throughout my journey; and I have raised 375% of target, which is currently at over £1300 for the Samaritans Leeds.

So to completely push myself out my comfort zone, to give myself a challenge where I would need to use every strength and courage to deliver this message, I signed up to do a Charity Boxing Fight with White Collar Fighter (https://www.whitecollarfighter.com). I committed myself to an 8-week training camp, set up a fundraising page in the hope that the more support and sponsors I received, the more it would encourage me to train harder, and make it more worthwhile going black and blue on my Fight Night. My fight took place on 3rd August, 2019 at the John Charles Centre, Leeds. I had never done anything like this before, no combat sports, no fighting, I had never punched anyone or anything before in my life, so getting in a boxing ring to fight a real human opponent was a real scary challenge for me, but a perfect way to raise some money.

With my boxing journey now over, days later, I may have come out the other side in one piece, but I still haven’t quite processed everything, and I am still shaken up and emotional from it all. I genuinely never prepared myself for how mentally challenging this journey would be for me, and I don’t think that anything can EVER prepare you enough for that fight. Admittedly, I never anticipated the intensity of getting into that ring, literally being face on with your fear… and hand on heart, just how important it really was to have all that support around me – to remind me that even though it was just me and my opponent in that ring, that at no point was I ever fighting my battle alone. I think that’s why I am still so overwhelmed, because I can’t quite believe the amount of moral support I have had, from my incredible family and friends, but even from total strangers, it has been truly amazing.

After round 2, I was ready to give up, I was struggling to keep myself going , but my coach was right when he said to remember “why” I was doing it, what I was doing it all for; and hearing the support from my family and friends cheering me on at the ringside also really kept me going. It was undoubtedly the hardest 6 minutes of my life, and the most overwhelming feeling isn’t that I won my fight – it’s being reminded that there are unbelievable people who have always got my back, and there will always be someone who has got yours. Thank you to everyone who was fighting with me. You never know what someone is going through, or what lies beneath – so always be there for others, because we are stronger together. And be kind, especially to yourself.

If you would still like to donate, please check out my page: https://uk.virginmoneygiving.com/SarahDesjardins.

#mentalhealthawareness#mentalhealth#mentalhealthadvocate#mentalhealthstudentnurse#breakthestigma#samaritans#keepfighting#endthesilence#support#courage#mentalwellness#strongertogether

#ICUrestraint study: using audio-visual vignettes

Using audio-visual vignettes to explore how nurses make the decision to restraint delirious patients on the critical care unit

How do nurses make the decision to restrain a delirious patient? What influences their decision? Do they follow protocols or base their decision on an individual assessment of the patient? If they assess the patient, what impacts on this process: the nurse’s experience, the acuity of the unit, or perhaps just how they felt that day? These are some of the questions I am seeking to answer through my PhD research.

My background research showed that nurses were the main decision makers when managing patient agitation and lacked support from medical colleagues. The literature suggests that nurses found caring for agitated and delirious patients physically and emotionally challenging. Nurses used negative subjective terms such as ‘mad’ and ‘poorly behaved’ to describe patient behaviours associated with hyperactive delirium despite the existence of objective, validated tools such as RASS and CAM-ICU. This can lead to the sharing of judgements of dysfunctional or deviant patient behaviour (Carveth, 1995). Wide variations in restraint use appear to be influenced by previous adverse clinical experiences and unit custom rather than evidence based practice.

What is delirium? Delirium is a rapid onset, reversible, fluctuating condition characterised by inattention, changes in cognition, disordered sleep-wake cycle and increased or decreased psychomotor activity (American Psychiatric Association, 2013). It affects approximately 20-50% of mechanically ventilated patients in critical care (Krewulak et al., 2018).  Hyperactive delirium presents as psychomotor agitation, which is often cited as a rationale for initiating chemical and physical restraint in critical care despite a poor evidence base (Ai et al., 2018).

Think aloud

To answer these questions, I wanted to develop a data collection method which would help me to understand how nurses make the decision to restrain a patient, and identify potential modifiable factors. I rejected direct observation because it risked disrupting clinical care and I decided against written scenarios as i doubted these could convey the clinical urgency of caring for an agitated patient. Together with my supervisors, I chose audio-visual vignettes, or short films with ‘Think Aloud’ as the data collection method. ‘Think Aloud’ aims to reveal the thought processes involved in making decisions by encouraging participants to vocalise their thoughts.

Developing the method

I began by writing scenarios based on my reflections on practice and cues identified from my background research. I asked a clinical expert (an Advanced Critical Care Practitioner) to check the scenarios before I developed illustrated storyboards that detailed the patient behaviours I wanted to ask participants about. An enthusiastic group of colleagues agreed to simulate these patient behaviours, and I filmed and edited the audio-visual vignettes early this year. The vignettes depict a range of delirious critical care patients with varying levels of potential risk inference, such as agitated or combative behaviour or the presence of medical devices. Each film is preceded by a verbal handover, which provides an opportunity to explore whether subjective descriptors influence how the participants perceived the patient and if this affected their decision-making.

I piloted the vignettes with three participants. The method works well and simulates decision-making under time-pressure in the critical care environment. Early data suggests variations in practice, and a focus on short-term management over a consideration of the long-term impact of restraint use.

For more information about my PhD research please visit my study page. Data collection is ongoing and the study is actively recruiting new participants.

Would you like to take part?

please see the Participant Information Sheet

Your can contact me at a.m.teece@leeds.ac.uk. You can also follow me on Twitter @AngelaTeece

References

AI, Z.-P., GAO, X.-L. & ZHAO, X.-L. 2018. Factors associated with unplanned extubation in the Intensive Care Unit for adult patients: A systematic review and meta-analysis. Intensive & Critical Care Nursing, 47, 62-68.

AMERICAN PSYCHIATRIC ASSOCIATION, D. S. M. T. F. 2013. Diagnostic and statistical manual of mental disorders: DSM-5, Arlington, Va;London;, American Psychiatric Association.

CARVETH, J. A. 1995. Perceived Patient Deviance And Avoidance by Nurses. Nursing Research, 44, 173-178.

KREWULAK, K. D., STELFOX, H. T., LEIGH, J. P., ELY, E. W. & FIEST, K. M. 2018. Incidence and Prevalence of Delirium Subtypes in an Adult ICU: A Systematic Review and Meta-Analysis. Critical Care Medicine, 46, 2029-2035. 3

Reducing Restrictive Practices: Understanding Key Intervention Components

On Wednesday 5 June we held a dissemination event for the COMPARE study. COMPARE is an evidence review of interventions designed to reduce restrictive practices with adults in mental health inpatient settings. The aim of the event was to share preliminary findings from our evidence review with stakeholders (including frontline staff and service users) and provide an opportunity for discussion and feedback before we complete the study.

For anyone who was unable to attend in person, The Mental Elf took the event #BeyondTheRoom on Twitter. This was particularly important as it enabled people to follow along and participate in the discussion using the hashtag #BCTCompare.

In this blog we’ve tried to summarise the highlights from both within and beyond the room. You can also learn more about our motivation for the study, our preliminary findings, and why reducing restrictive practices matters by listening to the podcasts that we recorded before the event.

(1) John Baker sets the scene for the COMPARE study; (2) Krysia Canvin, Ian Kellar and Kathryn Berzins provide an overview of our preliminary findings; (3) Iris Benson describes her lived experience of restrictive practices and why it is important to reduce their use (NB trigger warning)

Setting the scene

John Baker opened the event by outlining why we need to reduce restrictive practices. As John explained, restrictive practices are harmful to everyone involved, so it’s vitally important to identify the most effective ways of reducing their use.

With the backdrop set, John introduced the first speaker, Iris Benson. Iris has lived experienced of restraint and uses her experiences to educate others. As part of this endeavour she has worked with us on COMPARE as an Expert By Experience. Iris spoke passionately about the need to address the use of restrictive practices.

Iris’ talk really set the tone for the rest of the afternoon, acting as a stark reminder of why we are doing this research, but also prompting us to look at the issue from a different perspective. This is why Iris’ involvement in our study has been utterly invaluable. As Iris pointed out, no-one behaves badly when they have experienced the kind of abuse that she has lived with. She asked how would you expect someone who has experienced trauma to behave when frightened? And how would you expect them to respond to being physically restrained?

In her typical fair-minded style, Iris went on to emphasise that she is not interested in blaming individual staff. Instead, she asked us to acknowledge that using restrictive practices can harm staff too and urged researchers, service users and staff to work together in this crucial area.

Following Iris was Tim Kendall who shared some reflections from his early days practicing psychiatry in the asylums. Tim is a co-applicant on the COMPARE study and a Consultant Psychiatrist for homeless people in Sheffield. Equally dedicated to improving reducing restrictive practices, Tim outlined the work he’s leading as National Clinical Director for Mental Health @NHSEngland @NHSImprovement and Director @NCCMentalHealth. It’s a powerful message when people traditionally divided into “them and us” make the same argument for change.

This really summed up the purpose of the afternoon, to bring different stakeholders together to consider how we can move forward in an effective manner. But what does the evidence say?

The intervention landscape

The initial goal of COMPARE was to systematically map all interventions designed to reduce restrictive practices with adults in inpatient mental health settings. Krysia Canvin introduced us to the intervention landscape.

Having sifted through 17,000 records, the team identified 150 unique interventions to reduce restrictive practices.

These interventions comprised all manner of procedures intended to reduce the use of restrictive practices, injuries and “challenging” behaviour or improve staff and service user experiences and safety. These procedures ranged from staff training, debriefing, data review, to introducing sensory rooms and changing staffing levels. Most interventions had multiple procedures.

Krysia explained how most interventions were one-off endeavours, but that we also identified 29 ‘intervention families’ where the same intervention had been used multiple times.

Unfortunately, despite all these good intentions, Krysia said that many of the interventions were poorly described, and few had been subject to high quality evaluation.

Krysia then drew our attention to two further issues. First, that few studies involved service users in the design or delivery of the interventions (and even fewer in their evaluation); and second, that many studies aimed to reduce harm or injury to staff – and subsequently measured the impact on these of their interventions – but only a handful were similarly focused on harm or injury to patients.

Consequently, she suggested, we are left with a disparate, complicated and low-quality evidence base: we simply do not know what the (most) effective way to reduce restrictive practices is. Geoff Brennan (#InTheRoom), founder of Starwards, suggested that rather see this as ‘a problem’ we should be heartened by the fact that there are so many initiatives. Krysia concluded by highlighting the difficulties of making comparisons between so many diverse interventions and how looking at their Behaviour Change Techniques could help.

What are behaviour change techniques?

The next speaker, Ian Kellar, brought a dual perspective. Ian shared his expertise on Behaviour Change Techniques, but also has a son with autism who experiences threats of restraint.

Ian explained what Behaviour Change Techniques (BCTs) are, that is, the very basic components that are used in interventions to change behaviour. Examples include ‘goal setting’ or ‘instruction on how to perform a behaviour’. The idea is that we can use these components to design interventions that target the behaviour we want to change using proven mechanisms. Ian described it as cracking open the ‘black box’ of interventions to see what exactly it is that leads to the change.

Can we use BCTs to avoid reinventing the wheel?

The final part of the COMPARE study involved looking closely at the interventions we found to see which (if any) Behaviour Change Techniques they used. Kathryn Berzins presented these findings, describing how we identified just under half of the available 93 BCTs in the interventions. Most of these BCTs were in the categories of ‘Goals and Planning’, ‘Shaping knowledge’ and ‘Antecedents’ (where the social or physical environment is altered to try to prevent incidents arising).

Kathryn reminded everyone that just because we didn’t detect a BCT in an intervention doesn’t mean it isn’t used, just that it’s not described anywhere. Kathryn explained that even thought lots of these interventions have been shown to reduce different restrictive practices, we don’t know which of their ‘ingredients’ are the active ones. If, however, we can test BCTs (or categories of BCTs) separately we will be able to work out which ones have the most effect and drop some of the others. Equally, there are also a lot of BCTs that don’t seem to have been tested for their potential to reduce restrictive practices that are certainly worth considering.

Kathryn concluded that we need to take a step back and try some more simple interventions (informed by service users themselves) otherwise we risk constantly reinventing the wheel.

The discussion

We asked everyone attending the event as well as those following #BeyondTheRoom to provide us with some feedback on four points.

We’re really grateful to everyone who attended and/or contributed to discussion on Twitter. Some really important points were made that we will think about very carefully.

The event generated much discussion (even the day before!) and we were really pleased to receive some positive feedback.

Most importantly, we hope this is the beginning of an ongoing conversation (and action) between all of us who are working towards reducing restrictive practices. You can join the conversation by tweeting using the hashtag #BCTCompare, commenting below or you can contact us.

Tickets Available – Reducing Restrictive Practices: Understanding Key Intervention Components

As we move into the final stages of COMPARE: Establishing components of programmes to reduce restrictive practices: an evidence synthesis, we are pleased to announce that we will share our findings at a dedicated event:

Reducing Restrictive Practices: Understanding Key Intervention Components

12.30-15.30 5 June 2019
Horizon Conference Centre, Leeds

We have identified and mapped over 100 interventions that have been implemented in various adult mental health settings across the world. A free, interactive directory will be made available following this event. Using a specially designed taxonomy, we were able to discern between the active components of a substantial proportion of these interventions. Consequently, for the first time, we will be able to indicate which intervention components have the most (or least) potential to reduce restrictive practices.

We will also introduce a new study that builds on and extends this work: CONTRAST: Establishing components of interventions to reduce restrictive practices with children and young people: an evidence synthesis. Here, we will seek to identify interventions to reduce restrictive practices with children in a range of residential settings.

“We particularly encourage service users and carers to come along and join in the discussion.”

A draft programme for the event can be found below. Please join us for a complimentary lunch from 12.30 onwards. We hope that we will be joined by a wide range of stakeholders with an interest in the reduction of restrictive practices for plenty of networking and discussion. We particularly encourage service users and carers to come along and join in the discussion and we can cover travel expenses for those who wish to do so. Please contact us to make arrangements.

If you have any questions about the event, please do not hesitate to contact us. For travel and parking information visit Horizon, Leeds

Tickets are available via Eventbrite.

Does policy and procedure keep service users secluded longer than necessary?

International concerns (United Nations, 2013; World Health Organisation, 2017; Duxbury, 2019) have been expressed about seclusion use in mental health settings. Although initiatives such as Safewards and No Force First recommended strategies staff can use to prevent aggression or de-escalate potential incidents, healthcare staff continue to support its use (Muir-Cochrane, 2018). Our study ‘Factors influencing decisions of mental health professionals to release service users from seclusion’ – published recently in the Journal of Advanced Nursing – echoed these findings. We found previous research focussed upon which services are likely to be secluded and why they may be secluded (Bowers et al, 2017), plus how professionals’ decision-making to seclude service users is heavily influenced by local ward cultures and team personalities (Larue, 2009; Mann-Poll, 2011). However our work was the first to explore the factors that professionals consider when deciding to release a person from seclusion.

The Mental Health Code of Practice and NICE Guidance requires involvement from a range of professionals from the multi-disciplinary team (MDT) and outline a strict schedule for reviews:

  • medical review within 1 hour of seclusion starting,
  • 2 hourly nursing reviews,
  • 4 hourly medical reviews, and
  • 8 hourly multi-disciplinary team reviews.

Our findings raise questions about policy and procedure for reviewing the use of seclusion. We also found that, despite policy, decisions to release service users from seclusion were highly subjective and may be eroding professional skills, autonomy and confidence:

‘…the policy provides safeguards but years ago it was different. We once used a low stimulus room, after around 20 minutes went in. We de‐escalated through the door. Got him to move back, put his weapon down. Now it would be more formal, get a doctor, start the paperwork. It would probably would have turned out different and lasted longer and affected our relationship with him.’

Following instructions

The professionals in our study admitted – with some discomfort – that they told secluded service users to ‘calm down’ and ‘behave’ as it was important to be satisfied they would cooperate and comply with instructions when released. Professionals said they thought they had no choice but to use seclusion as they were unsure how else they could manage some incidents of violence and aggression. Professionals explained that they drew on their previous knowledge of the service user when considering what someone could or could not realistically manage and deciding how trustworthy they were:

‘We have all seen patients who say the right the right things to get out, hold it together for so long and then it all spills out’

Others warned against ‘being played’ by service users showing remorse that might be insincere or temporary. Service users in seclusion were not seen as passive, however. Professionals suggested release was as much in service users’ hands as theirs, because they knew what was expected and had the choice to take control and engage appropriately if they wanted to be released.

Fear of getting it wrong

These decisions also took into account the physical and ‘emotional tone’ of the ward: professionals acknowledged they could not release someone into ‘chaos’. They thought about the resources such as the size, permanency and skill-set of the team they had at their disposal asking themselves would the team cope post-release and deliberated about the consequences if they did not:

‘If you’re wrong, there goes your credibility’.

The nurses interviewed suggested that they could sometimes lose focus on the service user in seclusion as they struggled to manage the review timetable, assemble MDT colleagues and ensure documentation was correct. Nurses talked about needing to protect themselves and feared ‘getting it wrong’, ‘being judged incompetent’, or being ‘taken down a formal capability route’. In contrast, medical professionals did not feel this pressure, stating that as long the service user was safe they were not concerned about reviews being overdue or that their practice would be subject to scrutiny.

Daring to make bolder decisions

Staff numbers, permanency and skills were described as important, particularly the experience and confidence of the decision maker which had a strong influence on the likelihood of release and length of seclusion. Junior doctors depicted their role as managing physical health and supporting the nurses, and junior nurses worried about maintaining safety and supporting their team. Some Allied Health Professionals interviewed appeared confused as to why they were included, felt their skills were not used and doubted they had any influence on decisions. In contrast senior staff, who had greater experience and authority to move service users to other wards, said they made bolder choices and did not feel constrained by policy:

‘I’ll be honest and say if I want to bring somebody out then I’ll do that and I’ll let a medic know that’s what I have done’.

Our recommendations

Based on our findings, we made some recommendations:

  • We need to have conversations about how current policy is applied to ensure impracticable and counterproductive standards do not hamper efforts to release people from seclusion at the earliest opportunity:
    • Senior staff should be available to facilitate release, and,
    • Organisational procedures and support for staff nurses should enhance (not undermine) their confidence or autonomy to manage situations.
  • There could be better use of the skills of Allied Health Professionals to support planning for release.

Professionals would benefit from greater awareness of the factors that hinder or facilitate decisions to release people from seclusion. This study did not examine how the person secluded was involved in the planning or decision-making about their release. Increased understanding of how service users could be empowered to be involved in such decisions certainly warrants further investigation and is the focus of future research.

Haley Jackson is a PhD student in the mental health research group. You can follow her @haleyj102 or contact her at hchj@leeds.ac.uk.

References

Bowers, L., Cullen, A.E., Achilla, E., Baker, J., Khondoker, M., Koeser, L., Moylan, L., Pettit, S., Quirk, A., Sethi, F., Stewart, D., McCrone, P. and Tulloch, A. 2017. Seclusion and Psychiatric Intensive Care Evaluation Study (SPICES): combined qualitative and quantitative approaches to the uses and outcomes of coercive practices in mental health services. Health Services and Delivery Research. pp. 1-142. ISSN 2050-4357.

Department of Health (DOH). 2015. Mental Health Act 1983: Code of Practice. London: DH.

Duxbury, J., Baker, J., Downe, S., Jones, F., Greenwood, P., Thygesen, H., McKeown, M., Price, O., Scholes, A., Thomson, G. and Whittington, R. 2019. Minimising the use of physical restraint in acute mental health services: The outcome of a restraint reduction programme (‘REsTRAIN YOURSELF’). International journal of nursing studies. 95, pp.40-48.

Jackson H, Baker J, Berzins K. (2019) Factors influencing decisions of mental health professionals to release service users from seclusion: A qualitative study. Journal of Advanced Nursing https://doi.org/10.1111/jan.14086.

Laiho, T., Lindberg, N., Joffe, G., Putkonen, H., Hottinen, A., Kontio, R. and Sailas, E. 2014. Psychiatric staff on the wards does not share attitudes on aggression International Journal of Mental Health Systems 8(1), pp.14-14.

Larue, C., Dumais, A. and Ahern, E. 2009. Factors influencing decisions on seclusion and restraint. Journal of Psychiatric and Mental Health Nursing. 16(5), pp.440-446.

Mann-Poll, P.S., Smit, A., de Vries, W.J., Boumans, C.E., Hutschemaekers, G.J., Mann-Poll, P.S., Smit, A., de Vries, W.J., Boumans, C.E. and Hutschemaekers, G.J.M. 2011. Factors contributing to mental health professionals’ decision to use seclusion. Psychiatric Services. 62(5), pp.498-503.

Muir-Cochrane, E., O’Kane, D. and Oster, C. 2018. Fear and blame in mental health nurses’ accounts of restrictive practices: Implications for the elimination of seclusion and restraint. International Journal of Mental Health Nursing. 27(5), pp.1511-1521.

National Institute for Clinical Excellence (NICE). 2015. Violence and aggression: short-term management in mental health, health and community settings (NG10). London: NICE.

United Nations. 2013. Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Juan E. Méndez, 1 February 2013 (A/HRC/22/53). Para 78. Geneva: United Nations Human Rights Council (UNHRC).

World Health Organisation (WHO). 2017. Strategies to end the use of seclusion, restraint and other coercive practices. WHO QualityRights training to act, unite and empower for mental health (pilot version). Geneva: WHO.

all things #womensmentalhealth

Dr Rebekah Shallcross, AKA Mamafeminologist, mum of one, feminist, researcher and clinical psychologist has joined the Mental Health Research team at the School of Healthcare, University of Leeds. Here she talks about her research journey, the projects she’s worked on, and what led to her interest in all things #womensmentalhealth

In 2006 I was assigned my ‘last choice’ supervisor for my BSc undergraduate psychology research project (who knows, maybe I was also their ‘last choice’ student?!). The topic area: Implicit Memory Learning *insert crying emoji*. Safe to say, it was not ‘my bag’, and not the most enthusiastic start to my research career.

“When I proposed to write a review on violence within marital relationships, she responded with enthusiasm!

Despite this, in our final year we could choose between a taught course or completing a research dissertation. I chose the dissertation and this time I struck gold with my supervisor! When I proposed to write a review on violence within marital relationships, she responded with enthusiasm! This was research both she and I could get on board with! I don’t think I’d ever worked so hard and with as much motivation as I did on that project. It was the one piece of undergrad work where I was awarded a 1st and so it was here I think my interest in women’s mental health began…

Since then I have worked on several projects examining areas of health and mental health that predominantly affect women, completing my PhD on ‘Child Development Following in Utero Exposure: A Comparison of Novel and Established Antiepileptic Drug Treatment in Pregnancy’. This study compared the developmental outcomes of children under the age of 5 years who were exposed to antiepileptic medication (either levetiracetam or sodium valproate) in pregnancy. You can read more about it here.

Whilst this project didn’t specifically focus on women’s mental health, it gave me an insight into the way that medical profession can sometimes presume to know what is best for women… a theme that I picked up in my next piece of research, which again focused primarily on women’s physical health: ‘Women’s experience of Vulvodynia: A meta-ethnography of existing literature and an Interpretative Phenomenological Analysis of the journey towards diagnosis’. In this project women talked about their experiences of the medical profession when seeking a diagnosis for vulvodynia (an idiopathic pain experienced in the vulva) – and it was NOT GOOD! Some of the experiences that women had were shocking to me, and in others ways totally predictable (but that’s a whole other blog!)… you can read more about this study here and here.

“I knew I wanted to research perinatal mental health, domestic violence, sexual assault and all things #womensmentalhealth”

At this point, I definitely felt like a theme was developing, although I still wasn’t entirely sure what. It wasn’t until I saw an advert for a Post Doc Research Associate at The Centre for Women’s Mental Health at the University of Manchester that I even knew that Women’s Mental Health as a research topic was a thing! The project was looking at the effectiveness of perinatal mental health services for mothers in the first year of life: The ESMI study. It made me so excited! I applied, and got the job! This led me to work as an honorary researcher at The Section for Women’s Mental Health at King’s College London, where I spied on a desk Dr Kylee Trevillion’s PhD thesis examining how mental health services respond to domestic violence. I thought to myself: “This is the kind of research for me!” That really was a ‘lightbulb moment’ for me – whilst I had been broadly researching women’s mental health, I hadn’t ever really connected the dots in my mind before and named it as such. Now, I knew I wanted to research perinatal mental health, domestic violence, sexual assault and all things #womensmentalhealth. Ever since that realisation or ‘lightbulb moment’, it has been much easier for me to focus my attention on what to research. 

While I was working on the ESMI study, I was introduced to Prof Liz Hughes (@LizHughesDD) and instantly knew I wanted her to be my mentor! As we worked on the MiMoS grant application together, I asked and she said yes! And this really was a turning point for me: having Liz as my mentor has really helped me to focus, clarify my next steps, and envisage the research (and clinical) career that I want, whilst also helping me to gain that ever-so-elusive work-life-balance! Of particular importance with a 1-year old in tow…

Whilst Liz and I (and the rest of the MiMoS team) waited to hear the outcome of the application, I was lucky enough to work on the fantastic REPROVIDE project in Bristol: a study looking at the effectiveness of group programmes as an intervention for men who perpetrate domestic violence against their female partners. It was such a great experience working with researchers who were passionate about improving outcomes for people experiencing domestic violence. The success of the MiMos grant meant that I had to leave the REPROVIDE team, but we are now collaborating on a Research for Patient Benefit (RfPB) grant examining how change happens within these programmes.

It is an honour to be fortunate enough to exercise my passion pursuing research that aims to make a real difference to the mental health service provision of sexual assault survivors across the UK”

So now I find myself back in the North working as a Work Package Lead on the MiMoS study: an NIHR funded study looking at the Effectiveness of Sexual Assault Referral Centres (SARCs), which I helped to develop. It is an honour to be fortunate enough to exercise my passion pursuing research that aims to make a real difference to the mental health service provision of sexual assault survivors across the UK – and a far cry from neuroscience and the world of implicit memory learning!

The following links provide further support relating to the topics discussed in this blog:

You can contact Rebekah directly at mamafeminologist@gmail.com, or follow her on:

Future of Mental Health Nursing Conference 2019

When the Future of Mental Health Nursing Conference asked people to submit a quote that sums up Mental Health Nursing, I sent my favourite quote: “When you can’t look on the bright side, we’ll sit with you in the dark”. I was extremely lucky to win the competition to attend the conference in Edinburgh. The quote and my name was also printed on all the bags, which was fantastic to see. 

“When you can’t look on the bright side, we’ll sit with you in the dark”

Lewis Carroll, Alice in Wonderland

Greeting us at the event was a therapy dog called Phoebe. She brought a smile to everyone’s face (especially to mine, as I absolutely love dogs). This was such a lovely way to begin the conference. The main hall had an incredible atmosphere.  In one corner was Lynn (@AlongBorderline) who raises awareness of Borderline Personality Disorder through dance and theatre. In another was Angie Strachan (@AngieStrachan75), who attends Spoken Word events to raise awareness for mental health problems.

“To the world you might be one person, but to one person you might be the world”

Ben Thomas opened the event, telling the story of how he wanted to create a conference just for students after witnessing the number of mental health nurses drop when he worked at the Department of Health. This is how the Future of Mental Health Nursing Conference was formed! Although Ben is involved in planning each event, the majority of the conference is organised by groups of students – just like us. This made the event even more special.

The Chief Nursing Officer for Scotland, Fiona McQueen (@FionaCMcQueen) spoke first. She shared Scotland’s plans for funding, their hope to increase mental health nurses and how they are ensuring safe staffing. It was incredibly interesting to hear their plans. When Fiona said: “To the world you might be one person, but to one person you might be the world”, her words really reminded me of the impact I could have throughout my career. 

“What matters to you?”

This was followed by Tommy Whitelaw (@TommyNtour), who moved me (and most of the room) to tears. Tommy was a carer to his late mother, Joan, who sadly passed away after a battle with dementia. He told us how the encouragement he received from one nurse when he was struggling had helped him to carry on. He explained that she had no idea of the impact she had made that day, as she was simply being “a great nurse”. He now campaigns to spread awareness of dementia and emphasise the importance of asking: “What matters to you?” instead of: “What’s the matter with you?” ‘What Matters To You Day’ is now an annual event. It’s a fantastic idea and is absolutely worth taking a look at online to see if you can help to spread the message. Tommy told us he believed the room to be filled with the “greatest profession ever created” and finished by getting the room up for some karaoke. We ended by clapping and singing together which was a brilliant moment. 

Between speakers, there were workshops available to attend. Jennifer Young delivered the a trauma workshop, then James King and Lin Anderson led another on crime and prison education. In the afternoon, there was a mindfulness workshop led by James Kennedy. Followed by a writing talk by Elliot Lawrie. There was even a room to join in with some yoga!

Another incredibly inspiring speaker to was a man with first hand experience of addiction and mental health problems. David McCollom spoke in depth and gave us a real and raw depiction of his journey to recovery. He proudly shared with us the success of his business and his achievements. It was amazing to hear his story.

Playlist for Life

Next, Andy Lowndes, the music detective (@AndyDetective), introduced us to Playlist for Life and explained the impact that music can have on the brain. He told us how he and Sally Magnusson (@SallyMag1) formed Playlist For Life (@PlaylistForLife) after Sally found music helped when she was caring for her mother. Andy prompted everyone to think about what song they would include in their own playlist and why. He shared clips of people with dementia who displayed a marked and touching improvement when listening to their playlist.

Closing the event was comedian, Luisa Omielan (@LuisaOmielan). She gave a frank, yet funny talk about the issues faced within mental health care. She spoke about important topics and had us all clapping at her honesty. All the while, somehow managing to make us laugh!

“We have the ability to change so many people’s lives and providing this care can also really change ours for the better too”

The whole event was utterly inspiring and I left feeling prouder than ever before to have chosen this career. It reminded me that Mental Health Nursing is so much more than a career. We have the ability to change so many people’s lives and providing this care can also really change ours for the better too. I’m in such a privileged position to share incredible moments with people throughout their journey. The Future of MHN Conference has given me the boost I needed to finish my dissertation, prepare for my final placement and look forward to being qualified!

What song would you include in your playlist for life? Let us know in the comments below or via @mhresearchleeds

Dakota Scollen is a third year mental health nursing student at the University of Leeds. You can follow her @DakotaScollen

The Mimos Study

It’s lovely to have recently returned to the School of Healthcare, University of Leeds where I completed by PhD back in 2011. I have always looked back at my time in the Baines Wing with affection and it feels full circle to be back here working on another exciting project. This time I am working part-time as a Research Fellow on Professor Liz Hughes NIHR funded project “The Effectiveness of Sexual Assault Referral Centres with regard to Mental Health and Substance Use: A National Mixed Method Study” which is due for completion in May 2021. You can learn more about the project by visiting the Mimos website.

Alongside this post I am continuing my role as Researcher at Saint Mary’s Sexual Assault Referral Centre in Manchester where I have been working since 2015. As part of my Saint Mary’s SARC role, I was involved in the recent publication ‘The high prevalence of pre-existing mental health complaints in clients attending Saint Mary’s Sexual Assault Referral Centre: Implications for initial management and engagement with the Independent Sexual Violence Advisor service at the centre.’

The key findings were:

  • Prevalence of self-reported pre-existing mental health complaints in Saint Mary’s Centre adult clients was very high at 69% – the national average is 16 (McManus and colleagues, 2016)
  • Depression and anxiety accounted for most of these mental health complaints
  • Clients with mental health complaints took longer to present to the Saint Mary’s Centre than those without, although there was no difference in the long-term engagement with the Independent Sexual Violence Advisor service at the Centre between the two groups

The findings from this work demonstrate the need for the Mimos study. Being involved in this prevalence work at Saint Mary’s SARC was the catalyst for my involvement with the Mimos study.

Rabiya Majeed-Ariss is a Research Fellow at the University of Leeds and Researcher at St Mary’s Sexual Assault Referral Centre in Manchester. You can contact Rabiya here or directly, and you can follow her @r_majeedariss or on ResearchGate.

References

McManus and colleagues (2016) Mental Health and Wellbeing in England: Adult Psychiatric Morbidity Survey 2014, NHS Digital, Leeds.

April/May Update

Since our last update, we’ve published three blogs, won 2 prizes and published another paper. In April, Emily Pattinson wrote about the new study led by Liz Hughes that will explore NHS staff views about collecting sexual identity data from patients. Then, Susan Guthrie blogged about embarking on her PhD as one of the new CArDiNAL Fellows. Finally, Krysia Canvin marked Menstrual Hygiene Day 2019 by revisiting the issue of period poverty and its impact on service users’ dignity in mental health settings. She concluded by reflecting on how, ultimately service users’ dignity is at the centre of all our research endeavours.

Out and About

Leila Sharda, final year PhD student, attended the Faculty of Liaison Psychiatry Annual Conference, 15th May – 17th May. The conference was held at the Royal College of Psychiatrists in London and focused on long term conditions. Leila’s research examines how general hospitals respond to patients diagnosed with a personality disorder who are distressed. She presented a poster and gave a talk about the adverse responses these patients receive. Leila’s work was very well received: she was awarded joint first prize for her oral presentation by the panel of expert judges.

Leila’s poster of her PhD findings

Dakota Scollen (@DakotaScollen), third year mental health nursing student, attended the Future of Mental Health Nursing Conference in Edinburgh after winning a competition. Entrants were invited to submit a quote that captures the essence of Mental Health Nursing. Dakota won with her entry, a favourite quote from Alice in Wonderland:

“When you can’t look on the bright side, we’ll sit with you in the dark”

The Mad Hatter, Alice in Wonderland by Lewis Carroll

Look out for Dakota’s blog about the conference, coming soon.

Latest Publications

The contribution of mental health services to a new strategic direction for sexual assault and abuse services

Liz Hughes contributed to a paper published recently in the Journal of Forensic and Legal Medicine led by Professor Charlie Brooker. The paper reports a freedom of information request to NHS mental health care providers to ask whether they had a clear pathway to sexual assault referral centres following disclosure of sexual assaults by people using their services. Very few trusts reported that they had such a pathway. Given that sexual violence is not uncommon in people who use mental health services, and that sexual assault has a significant impact on mental health, there is a need for better joined up services.

Look out for a blog about Liz’ related study about the effectiveness of sexual assault referral centres with regard to mental health and substance use, coming soon.

Dignity. Period.

You may have seen a lot of news items about period poverty, where lack of money precludes some women from purchasing pads and/or tampons. You may have been shocked to hear that some girls were unable to attend school because they could not afford – or were too worried about their parents’ financial circumstances to ask them – to buy sanitary products. While Foodbanks request donations of pads and tampons, other campaigns, such as Bloody Good Period and Gift Wellness Foundation have been collecting and distributing sanitary products to homeless women, refugees and other vulnerable women. Today, on Menstrual Hygiene Day, The Body Shop have launched an initiative to collect products for Bloody Good Period at some of their stores. A scheme began in 2018 in Scotland to provide sanitary products in schools and Wales and England have recently followed. Unite the Union launched a campaign in 2018 for period dignity, urging employers to make sanitary products freely available in the workplace.

You may be surprised to learn that, at the time of writing, the NHS does not provide free sanitary products for patients, although the government has made a commitment to begin providing them as from July 2019. There is more to period poverty than money, however, as the organisers of Menstrual Hygiene Day hope to convey.

The cost of period poverty

Increased awareness of the potentially prohibitive cost of feminine hygiene products has brought the related costs of not having access to these products into sharp focus. GPs have reported increased rates of urinary tract infections resulting from the use of toilet roll or other makeshift solutions and/or prolonged use of specially designed products (increasing the risk of toxic shock syndrome). As well as health implications, lacking access to these products can disrupt education and employment. And then there is the negative impact on women’s dignity. The World Health Organisation defines dignity (in mental health) as:

Dignity refers to an individual’s inherent value and worth and is strongly linked to respect, recognition, self-worth and the possibility to make choices. Being able to live a life with dignity stems from the respect of basic human rights including: >Freedom from violence and abuse;
>Freedom from discrimination;
>Autonomy and self-determination;
>Inclusion in community life; and
>Participation in policy-making

Earlier this year, we blogged about how Liz Hughes, along with other members of MHNAUK and the Twitter community, issued a call for period dignity in “Seeing Red!”: Why We need Menstruation Awareness in Mental Health Services. The report highlights the challenges of managing menstruation in an unfamiliar setting, where you may not have the resources (or access to them), and documents some of the distressing and degrading experiences recounted by service users. Liz and her fellow authors call for the provision of sanitary products – which has been addressed – but also for more open discussion around menstruation in mental health settings and how mental health nurses can support this.

Mental Health Research in Leeds: Promoting safe, effective and therapeutic mental health care

Liz’ commitment to raising awareness of period poverty and stigma in mental health is just one example of how dignity is at the heart of our research endeavours in the Mental Health Research Group. For us, dignity and safety are intertwined: to protect and promote service user safety and reduce physical and mental harm is to actively demonstrate an individual’s worth. Through our research, whether our focus is on identifying ways to reduce restrictive practices (COMPARE & CONTRAST) or inequality and discrimination (asking about sexual identity), or examining how effective sexual assault referral centres are for people with mental health problems (Mimos Study, blog coming soon) or what happens when service users raise concerns about quality and safety (Mary Smith’s PhD research), our ultimate goal is dignity. Period.

CArDiNAL: A New Clinical Academic Research Fellowship

The beginning…

I am delighted to be starting my PhD journey with the University of Leeds in tandem with Leeds and York Partnership Foundation Trust. The new CArDiNAL (ClinicAl Doctoral Nurses and ALlied Health Professionals) Clinical Academic Research Fellowship embeds and promotes my research role within my clinical (Speech and Language Therapist) Specialist post. A strength of this new post is the support of a cohort of clinical academic fellows – including different Allied Health Professionals and Nursing Specialists – together, we form a community of research active clinicians across the Yorkshire and Humber footprint.

“The service users on my clinical caseload, their caregivers and the multidisciplinary team have directly influenced my research topic.”

Without this important initiative by Yorkshire and Humber NIHR CLAHRC I would not have been able to embark on this research journey whilst continuing to practice as a Speech and Language Therapist. As well as adding to the wider evidence-base for dysphagia in mental health, my research and ongoing clinical practice will inform each other. The service users on my clinical caseload, their caregivers and the multidisciplinary team have directly influenced my research topic and I will use my specialist skills to support involvement from other service users with communication difficulties in co-production.

“How can service users, caregivers and clinicians be supported to recognise the early warning signs of eating, drinking and swallowing problems?”

My PhD research will consider everyday quality of life around mealtimes and I will continue to identify and unpack good practice. My pilot work progressed from an initial case study (highlighting the different perspectives of an inpatient and members of his staff team; see Guthrie et al. 2012) to projects considering the risks associated with swallowing difficulties, communication and choking incidents in adults with mental health conditions (Guthrie and Stansfield 2017; Guthrie and Roddam 2011), leading me to ask: how can service users, caregivers and clinicians be supported to recognise the early warning signs of eating, drinking and swallowing problems? I developed a free booklet to support service user, carer and staff discussions about mealtimes (Guthrie 2013). The pictures, text and checklist suggest conversation topics, including aspects of swallowing difficulty that may have gone unrecognised or been overlooked. Any concerns about swallowing should always be referred to Speech and Language Therapy for assessment and advice.

I am keen to hear any patient or caregiver “stories” of the experience of living with mental health conditions and dysphagia.

Susan Guthrie is a Highly Specialist Speech and Language Therapist and CArDINAL Clinical Academic Research Fellow. For more information about her PhD research you can contact her here or directly via hcsg@leeds.ac.uk. You can also follow Susan on Twitter @SusanGuthrieSLT and on Researchgate.

References

Guthrie, S. and Roddam, H. (2011) Reporting and learning from choking incidents in adults with learning disabilities. Speech and Language Therapy in Practice.

Guthrie, S., Roddam, H., Panna, S. and Fairburn, G. (2012) Capacity to choose and refuse? A case study. Advances in Mental Health and Intellectual Disabilities, 6(6), pp.293-300.

Guthrie, S. (2013) Me at Mealtimes [Free online booklet]

Guthrie, S. and Stansfield, J. (2017) Teatime Threats. Choking Incidents at the Evening Meal. Journal of Applied Research in Intellectual Disabilities, 30(1), pp.47-60.