Experiences Of Weight Management Among People With Severe Mental Illness

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More than a numberExperiences of weight management amongpeople with severe mental illnessJo Wilton

Centre for Mental HealthContentsForeword 3Executive summary 4REPORT1Introduction52Factors affecting weight management among people withsevere mental illness83 The weight management experiences of people with severe mental illness11More than a number4What people with severe mental illness want from weight management services 145Challenges and opportunities for service providers176Key considerations for service providers and commissioners197Conclusion 21References 23Appendices 27AcknowledgementsThis project has been commissioned by the VCSE Health and Wellbeing Alliance (HWA), apartnership between the Department of Health, NHS England, and Public Health England, and 20national voluntary sector organisations and consortia. The Alliance aims to bring the voice of thevoluntary sector and people with lived experience into national policy making, to promote equalityand to reduce health inequalities.The Association of Mental Health Providers, Centre for Mental Health, and Rethink Mental Illness,as members of the Mental Health Consortium, are leading on this project alongside HWA partnersMindOut on behalf of The National LGB&T Partnership, and Race Equality Foundation. The projecthas involved extensive engagement with people with lived experience, the VCSE sector, NHS, LocalAuthorities, and academics. It will culminate in the production of a suite of resources.Input for this report was gratefully received from Liz Atherton, Emma Bailey, Andy Bell, JamieBlackshaw, Phil Brooke, Jabeer Butt, Alison Feeley, Dania Hanif, Gabriella Hasham, Samir Jeraj,Helen Jones, Hannah Lewis, Kathy Roberts and Kate Webb.We also thank the individuals who participated in interviews and focus groups, and who otherwisecontributed to this project.2

More than a numberPeople living with severe mental illness have additional challenges, compared to the generalpopulation, to overcome because of their illness and this qualitative research illustrates that ingeneral physical health, particularly weight and the weight management journey is challenging.People can also feel isolated and stigmatised. By highlighting the experiences of people usingthese services, we anticipate that health care professionals, CCGs and providers will be able to takesome of the opportunities as a result of reading this report. What has come to light is that thoseliving with severe mental illness want a holistic approach to their care, with focus on both mentaland physical health. Those living with severe mental illness may not be well at various timepointsand care providers can support them by having regular repeated conversations about healthierbehaviours. This can go some way to supporting those living with severe mental illness in makingsmall and sustained changes that will improve their overall health and wellbeing.REPORTAddressing the inequalities in health remains a priority and one area is doing more to supportthe physical health of those people living with severe mental illness. We know that people livingwith severe mental illness have a significantly higher prevalence of obesity than the generalpopulation. Listening to those living with severe mental illness highlights that, in many cases, theirphysical health is often neglected in favour of their mental health. This report captures the voiceof people with severe mental illness and the issue of weight management and provides healthcare professionals, Clinical Commissioning Groups (CCGs) and providers with opportunities to‘improve’/’further’ care and support.Centre for Mental HealthForewordPublic Health England is committed to improving the health of the nation and is a proud supporterof the VCSE Health and Wellbeing Alliance. The VCSE Health and Wellbeing Alliance is pleased to seethe publication of this report as it follows a recent publication by Mental Health Consortium partnerRethink Mental Illness that shed light on the physical health of those living with severe mentalillness, ‘Managing a healthy weight in Secure Services’. These reports reflect the VCSE Health andWellbeing Alliance and our partners’ commitment to improving the health and wellbeing of thoseliving with severe mental illness.Public Health England3

Centre for Mental HealthExecutive summaryREPORTMore than a numberPeople with severe mental illness havea substantially reduced life expectancycompared to the general population. It isincreasingly widely recognised that thisinequality is unacceptable and there is growingdetermination to close the gap. This has ledto commitments by government and nationalhealth organisations to make the physicalhealth of people with severe mental illness ahigher priority, and an important aspect of thisis weight management.Weight management is complex, and this isespecially true for people with severe mentalillness. They are more likely to have commonrisk factors for being overweight, such asreduced access to healthy food, lower incomesand health conditions that limit their mobility.In addition, they have risk factors not typicallyfaced by the general population, such asweight gain related to psychiatric medicationand admission to inpatient wards with fewopportunities to be physically active.This report explores key themes around weightmanagement for people with severe mentalillness based on the first-hand experiences ofservice users and professionals, as well as frompublished research.In focus groups, interviews and workshops,we heard from people with severe mentalillness about their experiences with weightmanagement. These included: the difficulties ofremaining motivated during fluctuations in theirmental health; the complicated ways in whichtheir eating was related to their emotions; andthe lack of long-term support. We also heardfrom practitioners and commissioners aboutsome of the challenges of providing weightmanagement support to people with severemental illness. These included: competingpriorities, with attention being focused on thepsychiatric side of care often at the expense ofissues such as weight; and lack of clarity aboutwho is responsible for coordinating physicalhealth care of people with severe mentalillness.Even without these additional challenges, weknow that sustained weight loss is hard toachieve. Our research suggests that, if this is4the only criterion of success, we are settingpeople up for failure which, in turn, can leadthem to become discouraged and feel a senseof hopelessness about weight management.More promising, however, are efforts that takethe emphasis off numbers (e.g. kilograms lostor reductions in BMI) and prioritise:1. Weight gain prevention: Maintaining ahealthier weight is not only easier thanlosing weight, it also avoids the negativeeffects on physical and mental healthcaused by weight gain. The people we spoketo wanted services that were proactive,instead of reactive, and intervened early, forexample when people are first diagnosedwith a mental illness.2. S etting achievable goals: Losing weight isdifficult and takes time. For someone with amental illness it may be especially difficultwhen they are unwell. But taking up healthyhabits and maintaining weight can beimportant and more achievable markers ofprogress.3. B uilding people’s intrinsic motivationto adopt healthier behaviours: Weightmanagement is a life-long process. Peoplewith severe mental illness told us about thechallenges they encountered on this journeyand of the things that helped them to staymotivated in spite of these setbacks, suchas support from a trusted person, flexibleoptions for engagement and more emphasison enjoyment (for example of physicalactivities they liked) than on weight loss.There are small-scale steps that health servicescan take to improve the experience of weightmanagement for people with severe mentalillness. However, systemic and cultural changesare also needed. Services that are proactive andco-ordinated in the support they provide fromthe outset, and that make weight managementfor people with severe mental illness a prioritythroughout their care, with a long term horizonand sustained partnership to help people tonegotiate weight management, would providethe best possible foundations for effectivechange.

In England, nearly two-thirds of adults are livingwith being overweight or obese (NHS Digital,2018). People with severe mental illness facemore challenges with weight managementthan the general population yet, until relativelyrecently, little guidance had been tailored totheir needs (Teasdale, Samaras, Wade, Jarman &Ward, 2017; Coventry, Peckham & Taylor, 2019).The prevalence of overweight and obesityis significantly higher among people livingwith severe mental illness than the generalpopulation (PHE, 2018a).Diagnosable eating disorders are also widelyrecognised as severe mental illnesses; however,owing to the special clinical considerations ofweight management in these cases, they will notbe covered in this report.Living with obesity is associated with a range ofoutcomes. These include: Metabolic conditions, such as diabetes,musculoskeletal disorders, cardiovasculardisease and various cancers Functional problems, such as difficultiestaking exercise Reduced mental wellbeing, often linked to anegative body image Reduced life chances, and, ultimately, Reduced life expectancy (Abdelaal, le Roux& Docherty, 2017).These outcomes contribute to the now widelyrecognised mortality gap, with people withsevere mental illness having a substantiallyreduced life expectancy compared to thegeneral population (Firth et al., 2019).Severe mental illnessSevere mental illness refers to psychologicalproblems that are often severe enough toseriously limit a person’s ability to work anddo day-to-day activities. It includes, but isnot limited to, severe and enduring psychoticdisorders, personality disorders and mooddisorders.Weight managementMore than a numberDefinition of termsREPORTThe aim of this report is to introduce people tothe key themes around weight management forpeople with severe mental illness. Based onthe first-hand experiences of service users andpublished research, it brings into focus some ofthe challenges and complexities of this subject,and it provides a starting point for those lookingto understand what is important to peoplewith severe mental illness in terms of weightmanagement support in the community.Centre for Mental Health1. Introduction“Weight management is the process of adoptinglong-term lifestyle modification to maintain ahealthy body weight based on a person's age,sex and height. Methods of weight managementinclude eating a healthy diet and increasingphysical activity levels.” (Nature, n.d.)While the above definition is useful andaccurate, Public Health England (PHE) and theHealth and Wellbeing Alliance acknowledgethat for some people with mental healthdifficulties, maintaining their weight within the‘healthy weight range’ may not be possible.Instead having realistic targets may be morehelpful. These may include maintaining weightby preventing further weight gain or, if losingweight, then keeping off even a small amount– about 5% – can be beneficial. Workingon setting achievable goals may also assistin helping a person to feel positive aboutthemselves regardless of any weight loss (NICE,2014).5

Centre for Mental HealthREPORTMore than a numberBody Mass IndexWeight management servicesHealth care professionals use a measurecalled body mass index (BMI) to determinean individual’s weight category. Body massindex (BMI) is used as an estimate of bodymass and is calculated by dividing a person’sweight in kilograms (kg) by the square of theirheight in metres (m²). BMI can help assess aperson’s weight status and sometimes waistcircumference is used in addition.In England, local authorities and the NHScommission weight management services.These include approaches managed bythe NHS in clinical settings and thosedelivered in community settings. PHE haspublished commissioning guidance basedon NICE guidelines which commissioners areencouraged to adopt when developing weightmanagement services (PHE, 2017d). Figure 1shows the tiers of weight management services.Tier 1 includes universal prevention services,such as health promotion; tier 2 includesmulticomponent lifestyle behaviour change andoften takes the form of group-based supportrun by commercial providers; tier 3 is specialistmulti-disciplinary weight management; and tier4 includes bariatric surgery.BMI is one of the criteria considered whenassessing appropriate care and treatment. Forexample, where tier 2 weight managementservices are available, those with a BMI of30kg/m2 or above may be eligible for referral.¹The referral criteria are adjusted for ethnicity (to27.5kg/m² or above) for people of black African,African-Caribbean and Asian (including SouthAsian and Chinese) family origin, as they areat an increased risk of conditions such as type2 diabetes and cardiovascular disease (NICE,2013).Figure 1: The weight management care pathwayTier 4SurgeryClassificationBMI (kg/m²)Healthy weight18.5–24.9Overweight25–29.9Obesity I30–34.9Obesity II35–39.9Obesity III40 or moreTier 3Specialist ServicesTier 2Lifestyle InterventionsTier 1Universal InterventionsIndividual, environmental and population levelhealthy eating and physical activity messages and initiatives¹ However, PHE guidance states that wherever possible service should also be offered to individuals with aBMI lower than 30 kg/m².6

MethodologyTackling obesity and promoting a healthierweight in society is a priority for governmentand national health organisations.This project, commissioned by the VCSE Healthand Wellbeing Alliance, reviews the existingliterature and contributes new research withan emphasis on support in the voluntary andcommunity sector and user-centred servicedesign. The evidence base for this project hascome from:The NHS Long Term Plan outlined plans toprovide targeted support and access to weightmanagement services in primary care forpeople with a diagnosis of type 2 diabetes orhypertension with a BMI of 30 and to fund adoubling of the Diabetes Prevention Programme(NHS England, 2019).A review of the literature, includingpeer-reviewed papers, briefings, policydocuments and guidelines. A call for evidence issued through thenetworks of Association of Mental HealthProviders, Centre for Mental Health, RethinkMental Illness, and Health and WellbeingAlliance partners The National LGB TPartnership and Race Equality Foundation. Stakeholder interviews with GPs, nurses,mental health practitioners, public healthconsultants, dietitians, academics,commissioners and voluntary andcommunity organisations.More than a numberThe causes of obesity are complex andare affected by many factors including ourenvironment (Blackshaw & Van Dijk, 2019).Creating a healthier food environment willinfluence the food choices people make,whilst improvements to the design of aneighbourhood can promote physical activitysuch as walking or cycling. The rates of obesityhave increased slowly over many years, and justas no single action can address this, it will notbe ‘solved’ in the short term. REPORTThe government and the NHS have madecommitments to prevent obesity and promotea healthier weight in society (e.g. Departmentof Health, 2016; PHE, 2019). The road toachieving this requires a long-term approachthat makes obesity everybody’s business andfor all organisations to work together (ADPH,2019). All sectors have an important role toplay, working with communities and providingcoherent and consistent messages.Centre for Mental HealthPolicy and practice commitments Focus groups with more than 50 peoplewith severe mental illness held in locationsacross England via VCSE service providers. A workshop of 35 people with livedexperience, VCSE service providers, NHSand other statutory service providersand commissioners, and Policy Leads inGovernment departments.7

Centre for Mental Health2. Factors affecting weight management among people withsevere mental illnessREPORTMore than a numberPeople with severe mental illness are morelikely than the general population to encountera combination of factors that contribute toweight gain. These factors may interact withone another and they are often related to severemental illness by more than one pathway.This section provides an introduction to thesefactors, some of the relationships betweenthem and how they are experienced by thepeople we spoke to in their day-to-day lives.MedicationMany antipsychotics, antidepressants andmood stabilisers are associated with weightgain (Serretti & Mandelli, 2010; Hasnain &Vieweg, 2013; Gafoor, Booth & Gulliford, 2018;Taylor, Barnes & Young, 2018; Alonso-Pedrero,Bes-Rastrollo & Marti, 2019; Marteene etal., 2019). See Appendices 3 and 4 for moreinformation about the level of risk with differentantipsychotics and a summary of guidelines.People who are starting psychiatric medicationfor the first time are at the highest risk and,for antipsychotics, the first few months afterstarting medication are when most weight isgained (Correll, Lencz & Malhotra, 2011; deHert et al., 2012). Moreover, those who gain themost weight in the first few months are at thehighest risk of overweight and obesity in thelonger term (Maayan & Correll, 2010; Bushe etal., 2012; de Hert et al., 2012).“Since starting on antipsychotics I’ve put onabout four stone. It’s not the medication'sfault per se, but taking them means that Icare less about things, while this is good forschizophrenia symptoms, it is not good forlosing weight. I find that I am lethargic often,and the weight I’ve put on doesn’t matter to methe way that it would’ve done before I startedtaking meds.” – Service user“I think Venlafaxine has given me an increasedappetite and I was always hungry while I didWeight Watchers. I attended for six months andthis did not change over this time. It was veryhard and required great self-discipline anddetermination which is incredibly hard whenfeeling mentally ill.” – Service user8NutritionPeople with severe mental illness are morelikely to have a poor diet, with a higher energyintake and poorer nutritional status than thegeneral population (Firth et al., 2018; Teasdaleet al., 2019). For the people we spoke to, thiswas linked to some of the factors discussed inmore detail here, such as emotional eating (thefood people typically turned to for comfort wascalorie dense), adverse eating patterns andcravings linked to effects of their medication.It was also linked to financial and environmentalfactors: people with severe mental illness havehigher rates of poverty and are more likely tolive in neighbourhoods with limited accessto healthier food and activity options (PHE,2018b). They may also have spent extendedperiods of time on inpatient wards, which havebeen identified in the research as environmentslikely to cause weight gain (Mangurian, Sreshta& Selilgman, 2013; Looijmans et al., 2017; PHE,2018b; Stubbs & Rosenbaum, 2018).Furthermore, these risk factors affect certaingroups more than others: for example, peopleof black and minority ethnicities are more likelyto live in deprived neighbourhoods and theyare overrepresented in psychiatric inpatientsettings compared to other people with severemental illness (Gajwani et al., 2016; Weich etal., 2017; HM Government, 2018).“My pain levels are really high today, I can’tactually put a dinner together. I’ll just have aready meal or a packet of biscuits or somethingelse, so for me it feels more like control istaken away, the healthy eating choices are notavailable some of the time and that just kicks meback into depression again.” – Service user“Finance is also barrier – economic barriersto accessing fresh fruit and veg. A lot of userswill have can of beans, toast, live on bread –cheapest available vegetables and meat.”– Support group provider

Disordered eating patterns, such as bingeeating, fast eating, night-eating, emotionaleating and continual snacking, may be moreprevalent among people with severe mentalillness (Teasdale et al., 2017). Emotional eatingwas one of the strongest themes that emergedfrom our focus groups, and the foods thatpeople used to manage their feelings were highin sugar and fat. Many people had turned tofood for comfort since childhood. Others hadstarted eating for comfort when their mentalhealth problems worsened, to help them tocope with the boredom and isolation that oftenaccompanied their illness. Sometimes food wasa way of coping with more difficult feelings:when people were feeling suicidal, long-termgoals didn’t matter anymore, they just neededsomething to lift their mood enough to helpthem to get to the end of the day.Another theme that emerged from the focusgroups, relating to the psychological aspects ofeating, was food as a form of self-harm. Somepeople had times when they felt worthless, asif they were good for nothing and would makea mess of everything. In this state of mind, theywould binge-eat as if to say, ‘Look how useless Iam, I have no self-control’ or ‘I don’t deserve tolose weight’.“I think that for me personally it is a lot abouthow you feel about yourself really. If you’re in ahappy space and feel less depressed probably Iwould eat less.” – Service user“I try and eat regular but it’s just not easy [.]and when I’m hyperactive because I’ve got thebipolar so. when I’m really really manic, I forgetto eat, I’m just off who knows where, doing whoknows what [laughs] but then I don’t think abouteating so it’s all hard on your system.” – ServiceuserMore than a numberEmotional eating and adverse eatingpatterns“I felt like most people who were overweight,it’s not an addiction to food, it’s an addiction tofeeling better about yourself which food is, erm,fills the void, it fills the void in your life.”– Service userREPORTThere is evidence that people with severemental illness engage in significantly lessphysical activity than the general population(Vancampfort et al., 2017). People at the focusgroups spoke about lethargy as both a symptomof their mental illness and a side effect of theirmedication, and many also had a physicalhealth condition that affected their ability tobe active, either because it limited mobilityor meant they required special assistance.Because of these barriers, they found itespecially difficult to motivate themselves toengage in physical activity for its own sake;the exercise needed to be something theyalso enjoyed. However, for many people,opportunities for enjoyable activity were lackingin their neighbourhoods.Mental illness also affected people’s eatingpatterns in other ways: for example, peopleat the focus groups spoke about being toodepressed to cook meals or too manic toremember to eat.Centre for Mental HealthPhysical activityLow energy and low motivationSome mental illnesses and some psychiatricmedications have a negative effect on energyand motivation. However, our research indicatesthat it’s important to make a distinctionbetween different levels of motivation. Thepeople we spoke to were clear that they werevery motivated to lose weight and to engage insome of the activities needed to achieve thatgoal – and this appears to be true not only forthe people we spoke to but for many peoplewith severe mental illness, as demonstratedby the STEPWISE trial which achieved itsrecruitment target of 396 participants threemonths ahead of schedule and collected datafrom 340 participants 12 months later (Holt etal., 2019).However, mental illness and the sedating effectsof medication often made it hard for people totake the very first step towards the overall goalof losing weight. For example, several peoplesaid that, once they were out of the house, theyhad few problems being active and enjoyedtaking a walk; but finding the energy to getout of bed in the morning and leave the housesometimes felt impossible without support.9

Centre for Mental HealthTo help them ‘get going’ many of the people wespoke to said they relied on caffeine and sugaryenergy drinks, which added to their difficultieswith weight management. If they had a weekor two when their mental health was worsethan usual, it could be enough to reverse anyprogress they had made. The more often thesesetbacks happened, the more hopeless they feltabout being able to lose weight.REPORT“If my mental health is worse than usual, mymotivation is weak, and I struggle to get out ofbed, I feel lethargic and heavy.” – Service userMore than a number“One of my words [about weight management]was ‘circular’ and that kind of comes down towhat you were saying, you know, you start tolose weight and then something goes wrongand it might be depression or it might be pain orit might be something else.” – Service user“Patients say they want to be motivated by staff.They want to hear staff say let's go for a walk.It’s hard to wake up in the morning becauseof the medication.” – Provider of exercise andactivity at a mental health trust“I actually really like healthy food, it’s not thatI don’t like it, and I love cooking, it’s just I thinkit’s more with my mental health, it’s just thatwhen I’m depressed I get really suicidal andI don’t care so I think right, I’m on the phone[for food] because I won’t go out when I’mdepressed.” – Service userasthma, fibromyalgia, irritable bowel syndromeand diabetes. These conditions affected theirability to be physically active and accessservices if, for example, the building lackeddisabled facilities.“Whilst I was doing that course, my painlevels were very high and I couldn’t do any ofthe exercises [.] so there were weeks whereI maintained my weight and they were reallypositive about that, they were like, ‘Well,considering where you’re at and where yourpain levels are at, you’re doing really well,’ so Ifound that really helpful.” – Service userBox 1: Which people with severemental illness are at the highest riskof weight gain?Certain groups of people with severemental illness have a higher risk of weightgain than others. These are: Young people with first episodepsychosis People with limited previousexposure to psychiatric medication(drug naïve patients) People taking olanzapine orclozapine People who rapidly gain weight inthe first six weeks of treatment withantipsychotic medication People with depression Women (Kinon et al., 2005; Tek etal., 2016; Dayabandara et al., 2017;Rajan & Menon, 2017; PHE, 2018a).Other health difficultiesPeople with severe mental illness are morelikely than the general population to have aphysical health condition (Hert et al., 2011;PHE, 2018a). The people who attended thefocus groups had diagnoses including arthritis,10

A common experience among the people wespoke to was one of services only addressingweight gain after they had become overweight,instead of helping them to maintain theircurrent weight status and prevent puttingweight on. Gaining weight had negative effectson their physical and mental health. And eventhose who succeeded in losing weight did notalways feel like they had been able to return tothe person they were before the weight gain:they put weight on more easily than they had inthe past and, if they had lost a large amount ofweight, they had stretch marks and skin-flapsthat affected their confidence.“There has been permanent changes madeto my body as a result of medication. All thestretch marks that scar my body remind me ofmy journey. This is a permanent reminder ofthe damage that I can do to my body if I do notlook after myself and continues to cause anxietyand self-critical and disgusted view at my ownbody when unclothed and after losing 10kgthese have not gone away and the skin-flapscreate extra weight which I have to carry abouteverywhere. I cry when I see pictures of my 50kgself and what I look like now in pictures, it makesme feel like I am trapped in somebody else'sbody and that I am being punished.”– Service userSome people had been asked about their weightby a health care professional. However, despitethe issue being raised, they were not offeredhelp with weight management. Signpostingor monitoring without proactive support oftenfailed to translate into the person taking action.For those who did manage to access a weightmanagement service, the support was typicallyshort-term and they found it hard to maintainthe changes after it had ended.“With my GP it was kind of, ‘Oh well, you knowyou could do with losing a little bit of weight,’but you know, full stop. It’s wasn’t like, ‘Well,I could refer you to a group that will help withweight management or I can get you a reducedaccess fee to a gym.’” – Service userMore than a numberReactive servicesLack of follow-up and of long-termsupportREPORTThe people we spoke to had a range ofexperiences with weight management. Forsome people, it was a struggle they faced ontheir own; others had the support of family,friends and GPs; and some had accessedcommercial weight loss services. Typically,the issues they experienced were the same asthose that anyone would experience with weightmanagement but were exacerbated by thechallenges connected to their mental health.Centre for Mental Health3. The weight management experiences of people with severemental illness“I think some of the problem then comesbecause services are funded by a particularsector within the NHS or through the doctorssurgery, whatever it is, they come to an end, soyou are then left on your own to try and carryon those practices, and I find that I don’t haveenough mental stability to be able to carry on, Idon’t have the willpower to carry on without thatsupport and that support just gets cut.”– Service userMedicationAs discussed above, starting antipsychoticmedication for the first time is a high risk periodfor weight gain. It is also a time when a personis likely to be at their most unwell. Some ofthe people we spoke to had no recollection ofbeing told about the weight gain potential oftheir medicat

healthier weight is not only easier than effects on physical and mental health caused by weight gain. The people we spoke to wanted services that were proactive, instead of reactive, and intervened early, for example when people are first diagnosed with a mental illness. 2. Setting achievable goals: Losing weight is difficult and takes time.

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