On 26^th April, a group of researchers from UCL and the McPin Foundation, people with lived experience of mental health problems and staff from the Complex Depression, Anxiety and Trauma (CDAT) service at Camden and Islington NHS Foundation Trust and the Complex Care Team (CCT) at Barnet, Enfield and Haringey NHS Mental Health Trust, came together for the study’s first working group. What is so exciting about this project, is being able to bring together people with such varied experiences, perspectives and expertise, to work out what the community navigator support should look like: What skills, qualities and experience should our community navigators have? How can they best support people to make social connections and access activities in their community? These are just some of the questions that we’ll try and come up with an answer to over the course of the project, and particularly in the next few months.

We began the session by looking at the initial plans for the study (click to see the presentation slides), before discussing the principles of co-production and how we could use these principles to inform how we work together as a group (click to read more about the co-production approach that we’re using in the study). We later had a whistle-stop tour through theories of loneliness and some existing projects such as Wellbeing Enterprises, Groups4health and Connecting People Study which helped us to begin thinking about the core elements of our model: what are we trying to target when we talk about loneliness? What methods do these existing projects use to help people feel less lonely? What tools can we use to begin talking with people about their social world? The most striking thing about this presentation, which can be accessed here , was the lack of research evidence outlining effective methods for reducing loneliness among people with mental health problems. This gives purpose to why we are doing this project and serves as a powerful motivator for designing the best possible model of support that we can.

A particularly productive conversation resulted from everyone in the room splitting off into their primary group of expertise: practitioner, expert through lived experience or researcher. Each group was given a piece of flip chart paper and asked to put down their ideas for the community navigator support. We then came back together and discussed our ideas. These focused on the content of the support, the role of the community navigators and key questions which we’ll need to address before the community navigators’ work begins. What was interesting was that each of the groups came at this task from slightly different angles, reflecting their different perspectives of mental health services and providing a clear demonstration of how beneficial the co-production model will be.

This model illustrates the initial ideas the group had about the role of the community navigators and the support they will provide. What do you think? Is there anything that we’ve missed that should be added?

Despite really useful and animated discussions about community navigator support and the project more generally, we had run out of time and had to bring the first meeting to a close. Here, we’ve captured some reflections from people who attended:

“Healthy relationships are key to everyone’s mental wellbeing. Sometimes, traditional mental health ‘treatments’ don’t allow time to explore and address the other factors that are making a person feel isolated and lonely. Our communities often have rich untapped resources but that require some support to navigate. It is exciting to be involved in a project that is specifically working towards helping people to build social connections in a way that is meaningful to them.”

“I hope that our project will enable people like myself to begin to take their first steps forwards. For three years I struggled with agoraphobia, feeling frightened, alone and depressed, completely trapped in my isolation. One of my many hopes for our project is that we help more people like me to know that they are not alone.”

Another member of the group, working at Barnet, Enfield and Haringey (BEH) Mental Health Trust, said:

“At BEH we are delighted to be involved in this research project. Often loneliness is an issue under the radar of services despite the impact it can have on service users’ quality of life.”

We’ll be blogging again after our next meetings on 10^th and 31^st May. On 10^th, we’re looking forward to hearing from Helen McPeake from Wellbeing Enterprises about the inspiring work they are doing in Merseyside and on 31^st, Peter Bates , will be visiting to talk about his work developing training resources for staff in the National Development Team for Inclusion.

We’ll also be coming back to our model each week and seeing how what we’ve learnt can develop the model further.

If you want to know more about the study, please view our main webpage and check out the McPin blog.

 

Do you have any thoughts about the role of community navigators? Get in touch with Kate, the UCL researcher, by emailing k.fullarton@ucl.ac.uk.

 

 

 

 

 

Our new research study is looking for up to 5 people with personal experience of mental health problems to advise on developing and testing a programme of support for mental health service users which aims to increase people’s community connections and reduce loneliness.

Loneliness can affect people in all walks of life. A recent UK survey found that 28% of people wish they have more friends. Most public programmes, such as the Campaign to End Loneliness¹, and most research on loneliness, has focused on older people. But there is growing evidence that loneliness has a range of harmful effects on health and quality of life for people of all ages. People with mental health problems report having less contact with family and friends than people in the general population do, and are particularly vulnerable to loneliness. Being lonely increases your chances of becoming depressed, and for people with mental health problems like depression and anxiety, also being lonely reduces your chances of a speedy recovery.

So finding ways to help people develop community connections may be a big help to improving people’s quality of life, and lead to a range of physical and mental health benefits. But this type of help is often not provided in mental health services, where staff time is limited and the focus can be more on medical or psychological treatments. There are a number of innovative projects happening across the country which may help people develop more connections. Community navigation projects help people review activities and places they enjoy, and people they like seeing, then support people in re-establishing social contacts or trying new things and meeting new people. But we lack good research evidence about how effective these projects are or how they may work best for people with different mental health conditions.

A research team from University College London and the McPin Foundation has secured funding from the School for Social Care Research (part of the National Institute for Health Research) for a Community Navigators research study. The study is led by Professor Sonia Johnson and Dr Brynmor Lloyd-Evans at UCL, and will work with mental health services in Camden, Islington and Barnet. Over a 2-year study, we will develop and test a programme of support for people with anxiety or depression using specialist mental health services, to help them increase their community connections and social contact, with the aim of helping to reduce loneliness. The support will be provided by paid Community Navigators. We will work to develop our programme with organisations that already provide this sort of help to people with mental health problems, such as the Wellbeing Enterprises group in Cheshire². We will also consult people who have used mental health services and staff who work in them. We will see whether adding this support to people’s other ongoing care can be done in mental health services, whether we can evaluate it successfully, and whether it seems to be helpful for people.

The first stage of the study over the spring and summer 2016 will involve planning exactly what the Community Navigators support programme should consist of. We will set up a working group, which can help plan the programme, and stay involved throughout the study to monitor how it’s going and plan how best to evaluate it. The working group is using a co-production approach involving people with mental health problems, practitioners and researchers.  We would like to involve up to five people who have personal experience of mental health problems in this working group. At working group meetings, we will provide information about possible ways the programme of support could work, and hear from experts in other organisations. Working group members will then discuss different options for the programme, and make their own suggestions or recommendations. We have set dates for five initial meetings of the working group in Central London.

Tuesday 26th April 2-5pm

Tuesday 10th May 2-5pm

Tuesday 31st May 2-5pm

Tuesday 14th June 2-5pm

Tuesday 28th June 2-5pm

Lived experience working group members will be offered payment for their involvement on the project (at a rate of £15 per hour) and travel expenses will be paid. We welcome enquiries from anyone who has experienced mental health problems. We would particularly welcome input from people who have: experienced depression or anxiety; have used specialist mental health services; and have some previous experience of being an advisor on a research project, or have worked as a researcher themselves.

For an initial discussion and more information about joining the Community Navigators Study Working Group, please contact the study researcher:

Kate Fullarton

tel: 020 7679 9051 k.fullarton@ucl.ac.uk

Please contact Kate by Friday 15^th April.

1. Campaign to End Loneliness: www.campaigntoendloneliness.org/
2. Wellbeing Enterprises: www.wellbeingenterprises.org.uk/

A study by Dr Alexandra Pitman, Prof David Osborn and Prof Michael King (UCL Psychiatry), funded by the Medical Research Council, has found that people bereaved by the suicide of a friend or relative have a greater probability of suicide attempt than those bereaved by the sudden natural death of a close contact.

Read the January 2016 paper in BMJ Open here: http://bmjopen.bmj.com/content/6/1/e009948.full

They also found that the probability of dropping out of a job or an educational course was higher in people bereaved by suicide, suggesting that employers and teaching staff should consider how to support people after a suicide (you can read more about this in the following Times Higher Education piece:  www.timeshighereducation.com/news/dropout-rates-soar-those-affected-suicide ).

The team analysed data from a national sample of over 3,400 adults aged 18-40 who had experienced the sudden death of a close contact. Of this sample, 31% had experienced a depressive episode since the bereavement, and 6% reporting having had to drop out from a course or job.  Almost half (45%) the sample reported suicidal thoughts since the bereavement, and 6% had made a suicide attempt since the loss. To give a rough comparison with the general population in England, the 2007 Adult Psychiatric Morbidity Survey had shown that up to 21% of people in the equivalent age group had ever had suicidal thoughts in their life, and 7% had ever attempted suicide in their life. The UCL study figures of 45% and 6%, respectively, only related to the period since the bereavement – an average of only 4 years.

The study authors had input from voluntary sector organisations providing bereavement support when piloting the questionnaire, including Cruse Bereavement Care, Samaritans, Widowed by Suicide, and Survivors of Bereavement by Suicide. Samaritans also advised on the wording of the press release accompanying the publication of this article, being mindful of the language used and avoiding any implication that suicide attempt might be inevitable after suicide bereavement. Read the Samaritans media guidelines on reporting suicide here:  www.samaritans.org/media-centre/media-guidelines-reporting-suicide

– Click the following link for the press release for this study: www.ucl.ac.uk/news/news-articles/0116/270116-bereavement-suicide-attempt-risk/

– A statement from Samaritans about the study findings: www.samaritans.org/news/comment-study-bereavement-suicide-risk-factor-suicide-attempt-published-bmj-open

– A statement from Cruse about the study findings: www.cruse.org.uk/news/BMJsuicide

– If you have been affected by suicide, you can find a Public Health England resource called ‘Help is at Hand‘ at this link: www.gov.uk/government/news/you-are-not-alone-help-is-at-hand-for-anyone-bereaved-by-suicide

A study by Dr Claudia Cooper (UCL Psychiatry) found that dementia patients in England’s poorest areas are 27 per cent less likely to be prescribed anti-dementia drugs than those in richer places. Read more in the Sun.

Over 800,000 people in the UK have dementia and numbers are growing as people live longer. There is no cure but drug treatments can help, for example by slowing memory loss among some people. The 2009 National Dementia Strategy made fair access to these treatments a priority.

We investigated how likely it is that people living with dementia get these drugs. We looked at primary care records from 6% of the UK population, including 75,000 people with dementia, from 2002 to 2013. In England people from least deprived areas (generally the richest) were 25% more likely to be started on ‘anti-dementia’ drugs than people in the most deprived areas. This did not change over time despite the National Dementia Strategy and other government policies. By contrast, in Scotland, how deprived the area where people lived did not affect whether they got this treatment.

It is striking that people with dementia living in more deprived areas get less treatment in England but not Scotland. Scotland spends more on health than England and the countries have different health policies. One reason for this difference in dementia prescribing may be that from 2006 to 2009 NICE restricted prescribing of these drugs to people with moderate dementia but the Scottish Intercollegiate Guidelines Network did not. We think that people from more affluent areas may be more likely to ask for and get treatments not endorsed by guidelines. In addition, younger people with dementia were more likely to be treated than older people, and men were more likely to be treated than women.

More research is needed to help ensure that dementia treatment in England is fair and meets equalities targets. We should be aware that policies to restrict treatment availability probably affect people in deprived areas most and make sure that changes benefit everyone.

This work was supported by The Dunhill Medical Trust [grant number R296/0513].

Have you ever missed a lecture, workshop or seminar you really wanted to attend? Perhaps you’ve been wandering around UCL glued to your phone, desperately trying to google the location of an event. If so, a group of UCL students have created Houndly – an events app that could mean you never have to miss another event on campus… including Division of Psychiatry events! Read more here or visit www.houndly.co.

Progress to Date

Dementia directly affects about 820,000 people in the UK with numbers increasing rapidly as the population ages. Our study team has  learnt from previous research that agitation is extremely common in people with dementia and causes distress to themselves, family carers and paid carers; incurring significant costs and leading to the break down of relationships.

The MARQUE Project is an ongoing five year long study currently taking place all over England, led by our research team at UCL.

MARQUE was funded in response to the government’s “Challenge on Dementia” in 2012(1). Professor Gill Livingston was awarded over £3 million of funding by the ESRC and NIHR to conduct this study to increase knowledge about dementia, agitation and personhood with the ultimate aim of improving quality of life of people with dementia(2). Agitation has previously always been tackled at an individual level, but in this project, we aim to tackle agitation at an organizational level.

There are 6 streams of MARQUE. Please see www.ucl.ac.uk/psychiatry/marque for full details of these streams. Below is an update of where we are at.

Stream 1 – Theoretical understanding of personhood and agitation

The conceptual stream of MARQUE is active. Professor Paul Higgs is conducting a theoretical investigation into the concepts of person and personhood and their application to care practises for people with dementia.

Stream 2 – Longitudinal study of agitation, quality of life and coping strategies in care homes.

This stream has been active since April 2014 when recruitment began.

We have made fantastic recruitment progress to date:

We have recruited 97 care home clusters nationally – the map to the right shows the spread of our recruitment nationally.

We currently have 4193 people consented to the study:

• 1649 staff
• 1456 residents
• 1088 relatives

Stream 3 – Development and testing of intervention in care homes

We are in the process of finalising a manual based training programme for care staff to test in a randomised control study with 20 care homes.

The manual has been developed based on the our previous systematic review of non pharmacological interventions in dementia (Livingston et al 2014), the START manual(3) for family carers and has been informed by multiple interviews with care homes staff about the barriers and facilitators of managing agitation in care homes.

We plan to begin piloting the intervention in one care home in January 2016.

Research Assistants are currently being trained to deliver the intervention to start mid 2016.

Stream 4 – Qualitative exploration of agitation and family carers coping at home.

Recruitment is active and 5 family carers have been interviewed so far.

Stream 5 – End of life and agitation: Ethnographic study of people with dementia, families and paid carers.

Recruitment is active and 4 full observations of agitation at the end of life in hospital have been completed so far.

Stream 6 – Pilot intervention at end of life

Stream 6 is planned to start following the completion of stream 5.

Ongoing PhD projects attached to MARQUE:

Quality of life: a comparison of the perspectives of paid staff, family relatives and individual’s with dementia in care homes.

Sarah Robertson:

This PhD is embedded into Stream 2 and compares and explores the perspectives of paid staff, family relatives and people with dementia in a care home setting. I am exploring these perspectives qualitatively and quantitatively to build a conceptual model of quality of life in this context. Supervisors: Prof Gill Livingston, Dr Claudia Cooper, Dr Juanita Hoe.

A longitudinal study exploring the prescription and administration of analgesic and psychotropic medication in UK care home residents with dementia

Francesca La Frenais

A prospective study embedded into Stream 2 exploring medication use in residents with dementia in UK care homes. The primary objective investigates whether taking a higher dose of analgesic medication means that a resident will receive more or less psychotropic medication. Supervisors: Dr Liz Sampson, Prof Paddy Stone, MCPCRD, and Prof Carmel Hughes, Queen’s University Belfast).

Development of an evidence based intervention to improve agitation for people with dementia in care homes

  Dr Penny Rapaport

 This PhD is embedded within Stream 3. The PhD will explore and describe: staff understanding of agitation; the barriers and facilitators to psychosocial intervention through staff training; the contributors to “care home culture” and what can facilitate a shift in these factors. This exploratory work will inform the development and piloting of the intervention. Supervisors: Prof Gill Livingston, Dr Claudia Cooper.

Written by Sarah Robertson, PhD Student & Research Assistant on the MARQUE Project.

Email: sarah.robertson@ucl.ac.uk 

Twitter: @1SarahMae

References

1. https://www.gov.uk/government/publications/prime-ministers-challenge-on-dementia
2. https://www.ucl.ac.uk/ion/articles/news/20150223
3. http://www.ucl.ac.uk/psychiatry/start/

 

Congratulations Dr Álvaro Díez Revuelta who has been awarded the prestigious ‘Juan de la Cierva’ postdoctoral fellowship under the Spanish National Research programme. Well done Álvaro! After more than two years working at the Division of Psychiatry, next October he will change UCL for the Complutense University of Madrid, and will be placed at the Centre for Biomedical Technology, Laboratory of Cognitive and Computational Neuroscience in the Spanish capital. With this new position, Álvaro will continue his research in brain activity disorganization in patients with psychosis, expanding his expertise to magnetoencephalography techniques. Álvaro will be hugely missed by the Division, but fortunately his new project will allow him to continue to collaborate with Dr Elvira Bramon, so we hope to still see him regularly in London. Álvaro, we wish you the very best of luck!

UCL Psychiatry’s Dr Naaheed Mukadam recently wrote an article for The Independent that analyses a recent study suggesting that dementia levels may be stabilising. Read it here.

Professor Helen Killaspy from the Division of Psychiatry has just published a new edition of her Rehab Psychiatry textbook called – “Enabling Recovery”.

How can people with severe mental health problems be supported in their personal recovery?  This question lies at the heart of rehabilitation psychiatry, and perhaps of mental healthcare as a whole. This brand new edition of one of RCPsych Publications’ bestselling titles aims to answer that question:
‘Enabling Recovery: The Principles and Practice of Rehabilitation Psychiatry (2nd edn)’ – edited by Frank Holloway, Sridevi Kalidindi, Helen Killaspy and Glenn Roberts

Individual Cognitive Stimulation Therapy (iCST) is a programme of mentally stimulating activities for carers and people with dementia to do together at home. Typically pairs complete up to 3, 20-30 minute sessions per week over 25 weeks. Each session is themed (eg: word games, current affairs, being creative) with a choice of activities to cater for the interests and abilities of the person.

 

iCST is based on group Cognitive Stimulation Therapy (CST), an evidence based psychosocial intervention, which has been found to benefit cognition and quality of life for people with dementia (see www.cstdementia.com for more information). With input from carers, people with dementia, and experts in the field, the iCST programme and materials were developed to cater for those unable to access CST groups. The programme was then evaluated in a large scale randomized controlled trial (RCT) across 8 research sites in the UK: London, Bangor, Hull, Manchester, Dorset, Devon, Lincolnshire, and Norfolk & Suffolk.

 

In early December we held an event for members of the iCST teams and study participants at Friends House to mark the end of the trial. We wanted to acknowledge the hard work and dedication of those involved, and share the results of the main trial and quantitative interviews. In addition to presentations from Professor Martin Orrell, Phuong Leung, and myself from the London team, the day included talks from Dr. Ruth Newman who gave us a lively and entertaining account of Devon team’s experience of iCST, and Dave Prothero who gave us a compelling insight into the experience and value of patient public involvement (PPI) in research.

 

It was a real pleasure to host the event, and to have the opportunity to catch up with teams and carers I enjoyed working with over the course of the study. For me, the highlight of the day was being able to present everyone with the newly published iCST Manual ‘Making a Difference 3’ (see careinfo.org for more information), and show clips from the accompanying DVD. The partnerships we established with the various research sites were very successful, and we hope that there will be other opportunities to collaborate on future research projects.