New FAIR merchandise available have you asked your service user about research?

Transcription

1 New FAIR merchandise available have you asked your service user about research? In this issue: Page 2: Staff update Pages 3 4: How do I let service users know about research? Pages 5-7: Good news! Page 8: Research Champion update Pages 9 14: MH studies recruiting Page 14: Have your say on future research studies Pages 15-16:Dementia studies recruiting Page 17: Join Dementia Research Page 18: FAIR Page 19 Review of Dementia Research Event Page 20: R&D office contact details 1

2 Rachel Rosenhead is a Research Support Coordinator based in Harrop House and joined the team in October 2015 in place of Liz Mainwaring. You can contact Rachel about approval of research studies at the Trust, study amendments, research passports and any research governance queries (Rachel.rosenhead@gmw.nhs.uk; ). We would like to thank Liz for all her hard work whilst at the Trust and give a very warm welcome to Rachel. Faiza Ahmed is our former PA and Administrator to the R&D Office but from November 2015 is now a Clinical Studies Officer. You will often find Faiza at Bentley House in Bolton helping staff to identify eligible services users who may be interested in participating in research as well as talking to service users about research opportunities and facilitating study procedures. If you have a Bolton service user who would like to hear more about mental health research opportunities at GMW please let Faiza know (faiza.ahmed@gmw.nhs.uk; ). Faiza was an asset to the R&D office but we are pleased she hasn t gone far! Heena Mistry became a Clinical Studies Officer in 2015 and at GMW works on dementia studies including AD Genetics and MODEM (please refer to page 15). If you have a service user who would like to be contacted about dementia research opportunities you can let Heena know at heena.mistry@nihr.ac.uk; A very warm welcome to Heena! Michelle Furphy (Mental Health CSO in Trafford) and Rowen Norton (Dementia CSO) are currently on maternity leave and will return later in Congratulations on their new arrivals! We look forward to their return. 2

3 We don t expect you to be experts about all the studies happening at GMW. If you are in doubt about a study having the correct approval to take place at the Trust please get in touch with Rachel Rosenhead who can advise ( ). The main area we really need clinicians help is to introduce the idea of research i.e. - there is a whole range from questionnaires to providing a blood sample and it can take place as a one off visit or over a few months. - Those who participate can report a range of benefits and are often pleased to be potentially helping others. - It is completely up to service users whether or not they choose to take part and their decision either way will not affect their NHS care. If service users are then interested in hearing more and are happy for you to do so, you can ask a Clinical Studies Officer to get in touch with them about research opportunities. Here is a reminder of who your CSOs are: Mental Health Clinical Studies Officers: Steve Lankshear Lead Mental Health CSO (mainly Salford): steve.lankshear@gmw.nhs.uk Michelle Furphy Mental Health CSO (mainly Trafford): michelle.furphy@gmw.nhs.uk Leanne Heathcote Mental Health CSO (mainly Bolton): Leanne.Heathcote@gmw.nhs.uk Karen Clough Mental Health CSO (mainly Specialist and Inpatient): Karen.clough@gmw.nhs.uk Faiza Ahmed Mental Health CSO (mainly Bolton): faiza.ahmed@gmw.nhs.uk

4 Dementia Clinical Studies Officers: Angela Aldridge Lead Dementia CSO: Rowen Norton Senior Dementia CSO: Phil Tinkler Senior Dementia CSO: Heena Mistry Dementia CSO: Referring a service user to a Clinical Studies Officer There s lots of research going on at the moment. Is it okay if the CSO contacts you to tell you about them? Do I have to take part? Absolutely not. They ll just let you know what s going on then you can decide. Ok! *types in PARIS inbox* Hi, this person would like you to call them to discuss studies they might be eligible to take part in. Many thanks. 4

5 GMW Staff Value Awards 2015 This year the Staff Value Awards received well over 170 nominations from individuals across the Trust. After deliberation from the judging panel, the nominations were shortlisted down to only 15, comprising of 1 winner, and 2 highly commended from each of the 5 categories. We are delighted to announce that awards were received for 2 out of these 5 categories in relation to research at GMW: The Working Together Best Team Award - The recipients of this award will be a team or group of people who make a major contribution through working together to best use the resources at hand. Through demonstrating great teamwork they have not only provided the best care possible, but have also led by example by working together. The Extra Mile Innovations & Improvement Award this award goes to an individual or team who shows a can do attitude, and goes out of their way to improve services. Through thinking outside of the box, the winner will have implemented a solution or new idea that s been adopted by the team around them. The innovation or improvement this individual or team have shown will have made a difference to others around them. Winner - The Research and Development Team This nomination includes staff in the R&D office, the clinical studies officers and the Psychosis Research Unit. All these teams work extremely well together to support colleagues across GMW and service users by offering advice, supporting research bids and raising awareness of research across the Trust. Their nominator said, these staff make research at the Trust a positive, enjoyable and rewarding experience with the opportunity for service user involvement in all areas. They demonstrate the true meaning of team work. Highly Commended - Helen Hird, Team Leader, Bolton Memory Assessment Service Helen has been incredibly proactive in promoting research opportunities to individuals who use the memory assessment service. Clinicians are always incredibly busy, but Helen goes the extra mile to introduce research at her team meetings and has supported research at all times. At GMW five times as many individuals are now involved in dementia research in the last two years. Her nominator said, We would like to take this opportunity to thank Helen for all her hard work and continued support of research. 5

6 Greater Manchester Clinical Research Awards 2015 ceremony On 4th November 2015 staff from across Greater Manchester Trusts and GP practices were celebrating excellence in health research delivery at the Greater Manchester Clinical Research Awards 2015 ceremony. Congratulations to Kathryn Harney (Associate Director Research at GMW) who was shortlisted for the Lifetime Achievement award! Very much deserved! Debbie Vinsun, Chief Operating Officer, CRN: Greater Manchester, said: Our research awards provide a great way to recognise and reward some of the people and teams who make clinical research delivery so successful across Greater Manchester. Clinical research provides the evidence we need to improve treatments for patients, and having a strong research culture helps to create a strong health service. By providing more opportunities for patients to consider research alongside their other treatment options, we can contribute towards a healthier Greater Manchester. More research at GMW The Clinical Research Network (CRN) has recently celebrated Trusts that have maintained or increased their research portfolio. GMW has led the local league as one of the Trusts that has increased their research portfolio, by 31% between 2013/14 and 2014/15. Good management A study published in 2014 showed that GMW was in the top five most productive mental health Trusts in England in terms of publications and also in the top five offering best value for research money This is a fantastic result. Thank you to all GMW staff, researchers and importantly service users who took part in research your involvement will help us to improve and develop our services. 6

7 The Trafford MAS team being presented their award for meeting their recruitment target to the PROMS study Trafford and Salford MAS are two of the eighty Memory Assessment Services around the UK that have taken part in the PROMS study. The aim of PROMS is to perform a cost-benefit analysis of these services with regards to early diagnosis of dementia and post-diagnostic support. The study involved approaching consecutive new referrals to MAS teams and their lay carers to see if they wanted to take part. For those that did, the person with suspected dementia s quality of life was measured by a) performing a questionnaire administered by a trained professional themselves and b) the lay carer completing a questionnaire. The lay carers were also asked about their own state of health and quality of life. Both teams worked hard together with the Clinical Studies Officers to ensure that their service users were made aware of this research opportunity. Trafford were also entered into a prize draw for meeting their recruitment target and consequently won a tablet! A great achievement, we look forward to hearing the results. 7

8 We need Research Champions across various directorates We URGENTLY need Research Champions in Bolton Mental Health Services. What do I have to do as a Research Champion? The Trust is expected to do all it can to give patients the opportunity to join in research. The role of a Research Champion will not take up too much of your time and you don t have to be an expert in research. The main aim of your role will be: To promote and raise awareness of research within your service Identify potential participants for studies from your own case load Support us in identifying innovative ways to increase recruitment If you have an interest in research and are able to commit to actively supporting research recruitment what is stopping you becoming a Research Champion? We have had an excellent response from dementia teams with 5 people coming forward to champion research in their service. They are Adam Sawczuk (Salford MATS), Katy Hughes (Salford Older Adults), Lindsay Prescott (Salford Learning Disability), Amanda Hamilton and Siobhan Tiley (Bolton MATS). Rebecca White has also become a Research Champion for Rockley House. Thank you so much! For further information about the role or to become a Research Champion contact Kathryn Harney (Associate Director Research) Kathryn.harney@gmw.nhs.uk Phone:

9 EULAST This study is investigating if a depot injection or oral medication of paliperidone or aripiprazole has better clinical results and participant tolerance. EXPRESS 2 This study is testing a mobile phone app to help service users spot a type of early sign that may indicate that they could soon become unwell. Participants will take part in the trial for up to 1 1/2 years and will receive 21 visits each visit lasting 1-2 hours. Participants will be randomised to either oral or depot paliperidone or oral or depot aripiprazole. Anyone age 18+ years with a diagnosis of schizophrenia. Their first episode of psychosis must have occurred up to one year and no more than 7 years ago and they are currently considering changing medication. This study has four phases. The research team are currently recruiting for phase 2. Participants will take part in a baseline assessment and two background questionnaires about their first experience of psychosis. Individuals aged 18+ years, who have a diagnosis of non-affective psychotic disorder and have had at least one episode of psychosis in the past year and are currently receiving antipsychotic medication. 9

10 Smoking is highly prevalent for people who have experienced mental illness. People with mental illness are more likely to be nicotine dependent and smoke more heavily that the general population. The study aims to establish the clinical and cost effectiveness of bespoke smoking cessation interventions for people with severe mental illness compared to usual GP care. Participants will be randomised to the bespoke smoking cessation intervention or treatment as usual. All participants will be complete a baseline assessment and 6 month and 12 month follow up with one our clinical studies officers. A 10 voucher will be given to all participants after each follow up appointment. Aged 18+ Years Diagnosis of Schizophrenia or Bipolar Disorder Is interested in cutting down or stopping smoking As a Trust our performance in initiating and delivering clinical trials is assessed in order to determine our research funding. This is done by setting targets e.g. having the first eligible participant recruited to a trial within 70 days. For Scimitar +, our goal was to have the first participant recruited by 28 Jan This was achieved on 10 Dec 2015 (just 21 days in!) as a result of the fantastic work of Faiza Ahmed (CSO) and Stuart McKay (Bolton CMHT). Congratulations! 10

11 ESMI DPIM This study is looking at the effectiveness and cost-effectiveness of mother and baby units versus general psychiatric inpatient wards and home based treatment teams. Participants will take part in a 2-3 hour interview asking about their experience during and after their admission to mental heath services about 4 weeks after discharge. A short video of the mother and baby interacting will be made and clinical case notes will be reviewed. Travel expenses will be reimbursed and a 25 Love to shop voucher will be provided. Females who were admitted to a psychiatric ward or home based treatment team in the first year after childbirth. This study is investigating mutations in specific genes and how this influences protein codes. Participants will be required to provide a blood /saliva sample, and will be asked some questions about their medical history and side effects. Individuals diagnosed with schizophrenia who have a European ancestry and 3 British grandparents MOLGEN This study is investigating the genetics involved in adverse drug reactions. Participants will provide a blood sample and will be asked a few questions about their smoking and alcohol intake. Participants medical records will also be looked at during the time of the adverse reaction. Individuals aged 18 + years who have discontinued clozapine due to an adverse reaction. 11

12 SPRING This study is investigating what happens in the brain that leads to psychosis. This study involves between 3 to 4 visits. The visits will be include: A screening Visit An MRS and PET scan A 12 month follow up. Individuals aged between 18-55, who have a diagnosis of schizophrenia, schizoaffective disorder or schizophreniform disorder and do not have diabetes. PPIP2 This study is investigating if some cases of psychosis are caused by immune system problems in some people. STRATA This study is aiming to confirm recent evidence of a neurobiologically distinct subtype of responsiveness to medication in schizophrenia, based on differences in dopamine and glutamate function in order to develop a clinically useful, acceptable and cost-effective stratification tool. Participants will be required to take part in an interview investigating their previous medical history, provide a blood and urine sample and have a PET and MRI scan. Individuals aged between years, with a DSM 5 schizophrenia/ schizophreniform disorder and not using clozapine within the last 3 months Participants will have an assessment conducted by the research team and provide a blood sample. The whole process would take up to 1 hour. Individuals aged between 14 to 35 years, who have a primary diagnosis of a first psychotic illness and have had less than 6 months of antipsychotic medication. 12

13 PRODIGY 2 BART Prevention of Long-Term Social Disability in Young People with Emerging Psychological Difficulties is a study randomized control trial of Social Recovery CBT to prevent social disability amongst young people with emerging mental illness. Participants will be randomly allocated to the usual care group or an SRCBT group + usual care. The study will take up to 15 months and participants in the SRCBT group will receive up to 36 sessions over nine months. Individuals aged 16 to 25 with severe and complex mental health problems showing early signs of persistent social disability. Presence of impairment in social and occupational functioning indicated by patterns of structured and constructive economic activity of less than 30 hours per week and a history of social impairment problems lasting for a period of longer than 6 months. This study is looking for young adults who are at risk of developing bipolar disorder to take part in a randomised controlled trial looking at the beneficial effects of CBT as a treatment option. Participants will be take part in 3 interview assessments as well as a qualitative interview. Participants in the intervention group will also take part in 25 CBT sessions over a period of 6 months. Anyone who is aged between 16 to 25 years, who is seeking help and meets one of the group criteria below: GROUP 1: Period of elevated mood for more than 2 days, but less than 7 days GROUP 2: Depression for at least 1 week and high mood GROUP 3: Depression for at least 1week and first degree family member with bipolar disorder. 13

14 COMPARE Pilot study to explore the feasibility and acceptability of CBT and antipsychotics and a combination in adults with psychosis. Participants will be randomized into 3 treatment groups: CBT alone group will receive up 25, 1 Hour Sessions for 6 months. Antipsychotics alone group will be encouraged to keep on prescription for up to weeks. CBT + Antipsychotics will receive both treatments. Who can I Refer? Service users who are 16+ who are in contact with mental health services, either meet ICD10 criteria for schizophrenia, schizoaffective disorder or delusional disorder or meet entry criteria for an early intervention for psychosis service. For all mental health research studies you can contact Steve Lankshear: steve.lankshear@gmw.nhs.uk or Or contact your local CSO (page 3) The National Institute for Health Research (NIHR) are looking for topics for research that should be considered for future funding. Mental health can be under represented in this respect and this could be an opportunity to raise its profile and ultimately get more funding calls focussed on issues of importance to staff, service users and carers. If you can suggest important, under-researched topics which may have impact nationally then please follow the link below and complete a very brief on-line suggestion form. The more people who suggest MH/Dementia/LD/etc. topics the better! 14

15 MODEM The study will look to see if there are differences between the eye movements of control participants and those with MCI and determine if this might be useful in the future as an aid to diagnosis. All assessments will take place at Lever Chambers Centre for Health in Bolton - Participants will be required to place their chin on a chin rest when performing visual tasks. This is so that the eye-tracker can follow the direction of their gaze when looking at different lights. - Cognitive tests (looking at memory and attention) - Travel expenses will be reimbursed Those who have had an MCI or Alzheimer's Dementia diagnosis (Clinical Dementia Rating Scale - global score of 1) from a MATS service and have capacity to consent Contact: Heena.Mistry@gmw.nhs.uk 15

16 AD Genetics This study aims to develop a better understanding of the causes of early onset Alzheimer's with dementia and provide a better platform for the development of targeted treatments and preventions. Participants and their carers with be visited once at their homes by two researchers. The carers will complete a semi-structured interview whilst the participant will complete a cognitive assessment and provide a blood sample. Individuals who were diagnosed with Alzheimer's dementia before the age of 65 years (early onset) and meet the NINCDS-ADRDA criteria for diagnosis of probable Alzheimer s Dementia. They also need to have a global deterioration score between 2 and 5. For all dementia research studies you can contact Angie Aldridge: angela.aldridge@nihr.ac.uk

17 Join Dementia Research (JDR) What is JDR? Join dementia research is an online service that was set up to help people register their interest to take part in dementia research. 850,000 people have been affected by dementia in the UK and research has shown that this figure is set to rise over the coming years By completing some basic information, you will be alerted to studies you might be eligible to take part in. It is then completely up to you whether or not you do take part. Anyone can sign up to JDR People with dementia, carers, healthy volunteers etc. You just need to be over 18. Signing up could make a real difference to you and others To register onto JDR or to find out more information you can do so by following the link below: Or if you need advice you can call: Alzheimer's Research UK: Alzheimer's Society: GMW Research Office: (we can also provide postal registration forms) HELP BEAT DEMENTIA 17

18 Free Access to Involvement in Research Since 1st October 2014, the FAIR scheme includes ALL service users at GMW. This means everyone will be able to hear about research projects in which they may be eligible to take part What is FAIR? Free access to involvement in research (FAIR) is a system that allows the Research & Development office to contact service users about Trust approved research opportunities that they may be interested in. Service users who receive a letter can either contact the researcher/cso directly or they can return the freepost reply slip stating how they would like to receive further information about research. There is NO obligation to do this and this DOES NOT constitute consent to research. If the service user is interested in the study and they are eligible to take part, recruitment progresses according to the method approved by the Ethics Committee and the Trust. Alternatively all FAIR correspondence will include the option to opt out of FAIR, in which case their medical record is updated and they aren t contacted through FAIR again. Look our for your local Research Noticeboard that provides research information relevant to your service. Service users can opt out of FAIR at any time by: Service user details will not be passed onto anyone via the FAIR Process. Calling ing fair@gmw.nhs.uk Informing a Care Coordinator who will inform the R&D team Completing the online form in the R&D section of the GMW The NHS commits to inform you of research studies in which you may be eligible to participate. 18

19 The free event took place on Friday 13th November at the new CURVE building and was attended by 56 people largely from MATS and older adult CMHTs. The main aims of the day were to: Raise awareness of current dementia research available both within the Trust and outside the Trust. Discuss why research is important and the realities of conducting research. Raise awareness of how to refer service users to research, including mention of Research Champions and Clinical Studies Officers. Help staff to feel more confident in how to bring up research with their service users and include this in their everyday practice. Promote the Join Dementia Research campaign as well as the FAIR (Free Access to Involvement in Research) process. 100% of delegates that completed the feedback form would recommend the conference. Will be able to feedback knowledge to the team which will hopefully impact on the number of patients informed about research and recruited on research studies Have an appreciation of worries and benefits of joining a research study which will help feeling more comfortable in discussing research with newly diagnosed patients After the event 25 delegates completed pledges to help at least one service user know about research opportunities and 5 GMW colleagues have been in touch with how to incorporate research into their service. The R&D Office would like to thank Gill Drummond, Lesley Jones, Steve Lankshear, Lesley Calvert, Ira Leroi, Angie Parker, Boben Benjamin and John Keady for taking time out of their busy schedules to provide enjoyable and informative presentations. 19

20 Research & Development Team Please note our new telephone numbers Kathryn Harney Associate Director Research Telephone Number: Research proposals Bid guidance R&D strategy and policies Contracts and planning Feasibility Jennifer Higham Research Governance Manager Telephone Number: Service support costs Research bid guidance Finance; IT; ICIS Research approval/governance Rachel Rosenhead Research Support Co-ordinator Telephone Number: R&D approval guidance Research governance queries Research Passport guidance Study amendments Lyndsey Bailey Research Recruitment Facilitator Telephone Number: Research recruitment FAIR R&D events 20