Lived Experience Advisory Panel (LEAP): Update and Postcard

A quick update for the LEAP-

1) We are nearly half way through the PRIMROSE clinical trial which is aiming to test whether a primary care led service for managing cardiovascular risk can lower cholesterol and improve health outcomes for people with severe mental illnesses

2) We are aiming to recruit 70 GP practices by June 2015 and have recruited 48 GP practices to date

3) Of 350 patients we have recruited 131 patients so far.

We have also started a qualitative research study, which has just been submitted to ethics and will involve two researchers recruited from the LEAP. This will be looking at why people engage in research and trials like PRIMROSE or not.

Message/ Postcard-

We also need your advice. What do you think would be the best way to keep patients involved in between 6 and 12 month appointments at their GPs? Would it be good to send people a message, such as a postcard, to keep people engaged in PRIMROSE and the service? What should it say (e.g. thank you) and look like.

Ideas most welcome!

Email:
bengray@mcpin.org

The Primrose Project: User- Led Research

The Primrose project is entering a very exciting phase and recruiting people from GP surgeries with mental health problems at risk of heart disease. The intervention will be tested on these participants to see if it can help people to improve their physical and heart health. The intervention is a practice nurse service in GP surgeries aimed at improving people's physical and heart health.

The LEAP is also entering an exciting phase. Two peer researchers have been selected from the main LEAP to conduct user- led research on why people choose to participate in research like Primrose or not. The aim is to improve the recruitment and engagement of people in future studies and trials.

A main LEAP will be held at the end of this research, late 2015, so that everyone stays involved and to get feedback from the LEAP.

Merry Christmas to Everyone on the LEAP: A Festive Message.

Merry Christmas to everyone on our Lived Experience Advisory Panel (LEAP) for the Primrose project!

After some very minor teething problems, Primrose is now recruiting people with mental health problems at risk of heart disease to the trial. In other words, the service in GP surgeries will soon be trialled to see if it is effective in helping people better manage their physical health and reduce the risk of cardiovascular disease.

The LEAP has been instrumental in helping with this, as some of you will know we developed a user-friendly information leaflet to recruit people to the trial.

Other news is that three people from the LEAP have been selected to work as peer researchers. This user- led research is currently under development and will start in March 2015 (something to look forward to in the New Year!).

Linking in with the Primrose project, this user- led research will look at why people become engaged in research and health services (or not!). The aim is to improve people’s engagement with research and with health services. This is a small scale study and in-depth interviews will be carried out with up to 20 participants. The peer researchers will be supported and trained to use their own lived experience explicitly within the research process following a participatory and user- led approach.

Finally, a meeting for everyone in the main LEAP is scheduled for Summer 2015 (when it will hopefully be a bit warmer!). We will be in touch with updates, so until then have a great Christmas and New Year!

Many thanks for all your contribution and involvement with the very successful LEAP.

LEAP Meeting

A very successful and well attended LEAP meeting was held in July.

The meeting drew together the larger LEAP. They looked at and reworked the information leaflet to recruit people to the trial in GP surgeries.

The group also discussed a user- led research project to be run by a small group of service users and carers from the LEAP. It is hoped to conduct user- led research by people from the LEAP.

The issue of recruitment to trials and engagement with the Primrose service was highlighted as a possible research project.

Next LEAP: 24th July 2014

The next LEAP is scheduled for the 24th July.

We will be in touch with LEAP members in due course.

Latest LEAP Activity

The LEAP intervention development group met last month at a very interesting and positively received meeting.

Members of the LEAP have recently given feedback in a number of areas, including: the Primrose information leaflet in GP surgeries; the Primrose information letter and reply slip; and questionnaires.

Members of the LEAP have also been contacted to ask if they want their names to appear on the Primrose website and nurse training manual, as an acknowledgement of their important involvement and contribution in the Primrose project.

Ben is drafting a paper, 'experts by experience', that ties his lived experience of mental illness with the work of the LEAP.

Latest News (Dec 2013)

A mock nurse consultation has been held with two people from the LEAP. A nurse piloted the service in primary care for people with mental health problems at risk of heart disease (CVD). Feedback will ensure that the service is relevant, meaningful and acceptable to people with mental health problems and carers.

Members of the LEAP have also given feedback about a questionnaire to be used in the PRIMROSE project.

A LEAP intervention development group for 8 people is being planned for early February 2014. Ben will be in touch with a date in due course.

PRIMROSE Case Study

A series of case studies illustrating the impact of service user and carer involvement on research:


http://www.mhrn.info/data/files/NEWS/MHRN_CaseStudiesAugust_2013.pdf

Recovery Champions: A Personal View On Making Recovery Happen.

Recovery Champions: A Personal View On Making Recovery Happen.

See my latest piece in Your Voice Extra: http://yourvoiceextra.tumblr.com/post/53272973517/recovery-champions-a-personal-view-on-making-recovery

PRIMROSE Award

The PRIMROSE project has won an award for outstanding service user involvement from the Mental Health Research Network (MHRN).

According to a judge of the award: "[the study] covers a major and enormously worthwhile concern, which is often overlooked".

The PRIMROSE project has also been chosen by the MHRN, together with a few other studies, as a good example of service user involvement.  A case study will appear in the next few months.

Next Meetings

The next meeting of the LEAP Intervention Development Group (IDG) of 8 people is scheduled for early April.  This is for the 8 people who have attended previous IDG meetings.

There will also be an annual meeting for the main LEAP of 27 people in June/ July.  This annual meeting is for everyone.

The team will be in touch about dates and to see if you are available.

Your Experience of the LEAP

We are asking LEAP members to share their experiences of the LEAP and what it meant to them to take part.  This will go on the PRIMROSE website (under development).

Please write only 60- 100 words maximum and email to: ben.gray@rethink.org

You can be anonymous or choose another name, if you do not want your name to appear on the PRIMROSE website.

Many thanks!

1 in 4: time to change and end stigma and discrimination.

Speak Up!  This article appeared in the August issue of Mental Health Nursing and is reproduced here by the author.  Benjamin Gray, Service User Expert, Rethink Mental Illness.

1 in 4: time to change and end stigma and discrimination.

Dr Benjamin Gray, a service user with lived experience of schizophrenia, explains his work with a charity to campaign against stigma and discrimination.

According to official statistics, one in four people will experience some kind of mental illness. Even today, mental illness carries with it strong feelings of stigma, exclusion, fear and discrimination. These affect all aspects of life, from those as simple as making friends and socialising to being able to work and find employment. Many people who experience mental illness spend their lives on benefits at the margins of society. Stigma about mental illness is still a strong, pervasive and undesirable force.

According to a carer of someone with mental health problems: ‘I think within mental health one of the biggest challenges is stigma. If you’re a carer for a disabled child, if you’re a carer for somebody with a learning disability, if you’re a carer for someone with cancer, the instinctive reaction is “Oh, you must be an angel, you’re having to deal with that, poor thing” you know, it’s a tragedy. With mental illness there’s still the stigma of “Hold on, is it catching?”.

In the words of another person with schizophrenia: ‘I go out in the community and they arrange housing for me, but it never lasts long. They know I’m different so they pick on me and bully me. They smashed my windows and call me names, so it never lasts long and I end up back in hospital’.

Images of mental illness in the media and among the public are very negative too, generating feelings of fear, disbelief, guilt and chaos. These can be controlled through better information about mental illness, optimism, promoting routine living, better social and employment expectations and hope.

An important question arises: If 25% of people suffer from some kind of mental illness, is the experience of mental illness so aberrant, abnormal and wrong? There is a strong case to be made that mental illness is just like any other kind of illness, in need of sympathy, care and support. It is a common human experience that should not be stigmatised.

To begin to end discrimination and stigma, Rethink Mental Illness has recently run a very well received advertising campaign, Time to Change, both on television and by posters showing a brain with a bandage saying: ‘If only’, indicating the promise of healing mental illness and the hope of recovery.

The research team has also organised a number of lived experience advisory panels (LEAPs). These bring people with lived experience of mental illness and their carers together so that they can shape the direction of individual research projects. The LEAPs shape the important work that Rethink Mental Illness does to end stigma, exclusion and discrimination against people with mental illness.

1 in 4 means that mental illness should not be stigmatised. It is a common human experience that many people encounter in their lives.

Ending stigma and discrimination will no doubt be a difficult and unsettling journey for many, but if some health professionals and people in society continue to silence and stigmatise mental illness, the consequences may be far more serious.

Denial of stigma and exclusion also denies the possibility of opening up new approaches and avenues of debate that may in turn influence more democratic alternatives in mental health. Psychiatry and mental health, rather than doing things to or for people with mental illness, must begin to work with them to end stigma and discrimination.

Write for MHN!

(Speak up! is an informal opportunity to for you to write for Mental Health Nursing about anything relevant to you and your fellow members. It can be subjective, serious or light-hearted, and you won’t be expected to provide references. If you have something to say, then just contact the editor to discuss style and deadlines. Email: mhneditor@gmail.com).

Peer Support in Hospital—A Shared Journey.

Peer Support in Hospital—A Shared Journey.

This article has just appeared in Schizophrenia Bulletin and is reproduced here by the author.
Benjamin Gray, Service User Expert, Rethink Mental Illness.

I have just spent a month in a psychiatric ward. In fact, as I write this, I’m still here. It’s my third relapse in 10 years, and the first time it lasted for nearly a year. Being in hospital is a painful experience, but it’s also a personal journey, and for me it was forming friendships on the ward that pulled me through (and continues to do so).

I’m diagnosed with schizophrenia. When I hear voices they are very negative and frightening, often saying things in a demonic hiss like “I’m an abuser” or “I’m coming.  You wait until you see what I’m going to do to you!”.

Being on the ward is often isolating and frightening, with people shouting at their voices and sometimes being restrained by staff. It would be better in my opinion if there was more therapeutic contact between us and the staff and more time for one-to-one supportive conversations to aid recovery.

The good thing about being in hospital is that I started taking my medication again, which I had stopped for some days. But the other reason I started to feel better was as a result of friendships on the ward.

Befriending other people, getting their support, praying for others, and engaging in group activities, all aided in my recovery. By taking part in group activities like creative writing or music therapy, I became closer to people (not as a diagnosis of schizophrenia, bipolar disorder, or depression but as human beings with complex problems, emotions, and difficult past histories).  We talked about our personal experiences, emotions, and difficulties and supported each other’s gradual progress and journey toward recovery. Importantly, I realized we were all in it together—I wasn’t alone.

I especially connected with a 70-year-old woman, Becky, who needed the care of nurses, me, and other people on the ward to make her drinks and just to hold her hand to comfort her distress. She has schizophrenia and dementia and is unable to look after herself. Recently, I took her with me to the chaplaincy group, where she said a little about herself and her 2 sons, which was the first group she had attended in some months. This helped us both a lot, and we have become good friends.

Friendships—showing a little bit of love and caring for each other—make the time on the ward easier and more rewarding. It can be tough and not everyone likes going into hospital, but I think the important thing to remember is that we can all support each other. It may seem like a little thing, but having a good relationship with another human being makes all the difference.

(Schizophrenia Bulletin Advance Access published October 30, 2012).

Latest News (October 2012)

The LEAP is acting as a critical friend to the PRIMROSE project.

The main LEAP is comprised of 27 service users and carers.  It has offered feedback on topic guides for focus groups and also questions for the systematic review (protocol).

The LEAP Intervention Development Group (IDG) is a sub- group of the main LEAP and last met at the end of September.  The IDG is comprised of 8 service users and carers.  It has recently offered feedback on:

• Enablers and barriers to the intervention (a service in primary care run by GPs and nurses for people with mental health problems at risk of cardiovascular disease, CVD).

• Insights drawn from lived experience of mental illness on what the intervention/ service should look like and do in order to help people with mental health problems. 

• The IDG made comments on the ways in which the intervention/ service should be tailored for people, so as to be targeted to their health needs and making it more acceptable to service users.  This will make the service more acceptable and personalised, perhaps increasing uptake so people attend appointments, and ensure that the service is relevant to people's individual needs.

• The IDG has also offered feedback on preliminary themes from focus groups with service users and carers.

• The LEAP IDG has drafted some recommendations to be considered by the PRIMROSE project.  For example, there was a positive response in the group to the fact that the intervention appears to be proposing not just medication (statins) but also small one step at a time goals for people to reduce risk of cardiovascular disease.  This makes behaviour change (diet, exercise, smoking) more realistic, achievable and person- centred by people’s choice.  In addition, the IDG proposed that service users and carers should be involved in some aspects of the training of nurses. 

20 Years Too Soon- Become a Physical Health Champion

People with severe mental illness die on average 20 years younger than the general population, often from preventable physical diseases (such as heart disease and diabetes).

Rethink Mental Illness is campaigning to ensure that the physical health needs of people with mental health problems are not neglected and calling for physical health champions.

Read more about the campaign: http://www.rethink.org/how_we_can_help/our_campaigns/current_campaigns/20_years_too_soon.html

Become a physical health champion:
http://www.rethink.org/how_we_can_help/our_campaigns/current_campaigns/sign_up_to_become_a.html

Latest News (August 2012)

Latest news about the PRIMROSE Project:

• Focus groups are nearing completion with service users, carers, GPs and nurses working in primary care.
• These focus groups are being fully transcribed and analysed by a qualitative group.
• The systematic review is nearing completion.  This reviews the literature and randomised control trials on how the service/ intervention might best work, nurse training, service users' experiences and the acceptability of the service to people with mental health problems.
• The next LEAP Intervention Development Group is scheduled for late September at Rethink Mental Illness in London.

P's Story: "My full recovery aimed at harmonising four areas".

I found myself in psychiatric hospital quite unexpectedly.  At that time I was a complex-ridden young man with an exact mind and idealistic attitude to the world.  My family lacked love and the atmosphere was cold and grim.

I was diagnosed with schizophrenia and three times a day was given painful injections with enormous doses. Slowly, I started coming back to reality but I rebelled, feeling that my problems could not be cured solely by medical treatment. 

I was only taking medicines, which made me feel very ill.  When after two years I tried to give the drugs up, strange thoughts and mystic experiences returned.  I was taken to mental hospital for the second time.

To sum up, I can state that my full recovery was based on activities aimed at

harmonising four areas:

·         Body – diet, hygiene, sport.

·         Mind – widening of consciousness, visualisation, astrology, foreign languages.

·         Emotions – love, forgiveness, courage, tolerance.

·         Spirit – faith, meditation, prayer.

The most important thing though was the decision for a healthy and responsible life, what I had been striving for over all these years.

T's Story: "They threatened to drive me completely insane".

It all started in January 2007.  I went to bed with a sudden feeling of severe dread that someone was out to get me.  I actually didn't go to sleep that night.  The voices talked me into thinking that I was being possessed which caused me to check myself into a mental health facility, during which time they continued to verbally abuse and denigrate me, saying I was worthless and that they were going to kill me.

My parents had to come and get me out.  Shortly after my release, the sleep deprivation continued (they simply talk loudly to me throughout the night), leaving me barely functional at work, leading ultimately to my resignation and loss of my job.  They commanded me to destroy much of my computer equipment and personal ID (driver’s license, social insurance card), which I did after they threatened to drive me completely insane.

They can impose feelings of nausea on me to disrupt my mood and sleep.  They can cause me to see visual hallucinations and they completely control my dreams every night.  They still wake me up every hour after 2 am.  They can also make me fall asleep.  They can make my fingers and face muscles twitch.  They can make you gag.

S's Story: "They loved to torture my mind".

I first started hearing voices in November of 2004.  At first I just heard people talking and couldn't understand them, they were mostly just outside my window.  I just ignored it.

Several days later I was watching TV and heard this great song coming from the next room, it was a black man and woman and I wanted the CD.  Then I realized I had no music turned on.  I searched the house and the basement and there were no radios on and I could only hear it from the one room.

All winter and spring I heard music.  Over the months I began talking to them every waking moment and they kept me without sleep for days at a time.  They said I was the most gifted psychic in the world.

I continued talking to them night and day and listened at times as they talked about me. I had long fights with them.  They loved to torture my mind.  They told me I was sexually abused as a child.

They wouldn't let me sleep for over three days and I kept seeing flashing lights all around the room.  I started drinking and I slept finally and seven days later my doctor put me in the hospital. They increased my medication and let me out after a week. My doctor kept increasing the medication.

Now I hear the music when it's quiet and sometimes the voices but not so bad.  This is my first step in recovering from the shambles my life has become and moving on.