Making an impact in mental health care and research
Mental health problems in our society
About 1 in 4 people live with mental health problems that affect their thoughts, emotions, behaviour, or the way they relate to others1. Depression, schizophrenia, anxiety, autism and dementia are examples, although many people live with problems that have not yet been named or diagnosed. There are effective treatments for many mental health problems, along with techniques to reduce their impact on a person’s day-to-day life. Unfortunately, up to half of all people with mental health problems in developed countries receive no treatment2. This may be because they have decided treatment is not right for them, or because their healthcare system is not able to give them the support they need. As mental health problems are experienced differently by different people, it is important that treatment plans are flexible and designed to support the particular needs of each individual.
Putting the person at the centre of mental health care
Only 50 years ago, mental health care was very different from how it is today. For example, it was usual for people with even mild mental problems to stay in hospital while receiving treatment3. Sometimes people with mental health issues were not treated very considerately or respectfully. Thankfully, we now have a much better understanding of medicines and other therapies (such as counseling), as well as the conditions themselves, and people are generally able to live at home while being treated.
If more specialist care is needed, this may be given in a specially designed care facility. Care facilities are much improved from the mental health hospitals of the past but could be improved even more if patients themselves are consulted on the design. For example, a journalist who had received mental health care herself reported that every door in the facility where she was treated had round metal doorknobs that were difficult to use with sweaty palms4;– a common symptom of anxiety and a side effect of some medicines prescribed by psychiatrists2 . Had patients been consulted on this design feature, it’s likely they could have pointed out its unsuitability. Taking medicines at the right time can also be problematic for people with memory difficulties or disordered thoughts – by discussing these difficulties with patients, evidence shows it is possible to find ways to overcome them, for example using pill boxes or text message reminders5.
Research has helped us to understand the causes and possible treatment of mental health problems. Both in routine health care, and when designing research, we now recognise the importance of getting the input of patients themselves
A ‘patient-centred’ or ‘person-centric’ approach means all aspects of healthcare are designed to meet the needs and preferences of patients6. These terms are used widely by government, doctors and patient organisations, who believe it is important to involve people in decisions about their care, with health seen as part of life as a whole7 . In a large survey of people with mental health problems, the majority said that they wanted to be more involved in decisions about their own care8. Where care is more person-centred, people receiving treatment (and their doctors and nurses) tend to have a better overall experience9.
Getting involved in mental health research
Research is an important part of designing future healthcare; without it, no new medicines and few medical advances could be made. Although research in mental health is just as important as research in conditions like cancer or diabetes, researchers planning a mental health study often struggle to find enough people to take part10. However, when a group of people with depression or schizophrenia was asked if they would be willing in theory to take part in research, almost all said yes11. Could part of the reason for low participation in mental health research be that most people are not aware of opportunities open to them6? Could it also be that people with mental health problems don’t always feel that the studies available are designed with their needs in mind12?
In the UK, a government group called the Mental Health Research Network wants to involve more patients in designing mental health research. This is because it’s been shown that if patients have been involved in designing a study, other patients are far more likely to want to take part8. People involved in designing research also say they feel they have made an important contribution to society7. Helping to design research might include giving an opinion on the treatment(s) being studied, the number of times participants need to visit the clinic, the responsibilities of participants between clinic visits, or the information written for study participants. Another important way to contribute to research is to help researchers to understand what kind of improvement they should look for in the people taking part in the study, because the sort of change seen as ‘meaningful’ often differs from person to person.
Could you or someone you know change the future of mental health care?
In the past 50 years, mental healthcare has changed a lot. A big part of this change is due to research that has helped us understand the causes and possible treatment of mental health problems. Both in routine health care, and when designing research, we now recognise the importance of getting the input of patients themselves. By being given more information and opportunities to make decisions, people often feel more satisfied with the treatment they receive, and may also help to improve care for other people in the future.
- Fundamental Facts About Mental Health. Mental Health Foundation, 2015. Available from: https://www.mentalhealth.org.uk/publications/fundamental-facts-about-mental-health-2015
- Mental Disorders Fact Sheet. World Health Organization, 2016. Available from: http://www.who.int/mediacentre/factsheets/fs396/en/
- Chow WS, Priebe S. Understanding psychiatric institutionalization: a conceptual review. BMC Psychiatry 2013;13:169
- Mental Health Patients Facilities Design Out Stress. The Guardian, 2014. Available from: https://www.theguardian.com/society/2014/jun/03/mental-health-patients-facilities-design-out-stress
- Barkhof E, Meijer CJ, de Sonneville LMJ, et al. Interventions to improve adherence to antipsychotic medication in patients with schizophrenia–A review of the past decade. European Psychiatry 2012;27(1):9-18
- Patient-centred healthcare. International Alliance of Patients’ Organizations, 2016. Available from: https://www.iapo.org.uk/patient-centred-healthcare
- Starfield B. Is Patient-Centered Care the Same As Person-Focused Care? Perm J. 2011 Spring; 15(2): 63–69.
- Survey of mental health inpatient services. Care Quality Commission, 2009. Available from: http://www.nhssurveys.org/Filestore/documents/MH09_RV5.pdf
- Crawford,M. et al. Systematic Review of involving patients in the planning and development of healthcare. British Medical Journal. 2002;325:1263-1267.
- Mental Health – How much does the UK spend on research? Welcome Trust, 2015. Available from: http://blog.wellcome.ac.uk/2015/04/21/mental-healthhow-much-does-the-uk-spend-on-research/
- Schäfer I, Burns T, Fleischhacker WW, et al. Attitudes of patients with schizophrenia and depression to psychiatric research: a study in seven European countries. Soc Psychiatry Psychiatr Epidemiol 2011;46:159–65
- Woodall A, Morgan C, Sloan C, et al. Barriers to participation in mental health research: are there specific gender, ethnicity and age related barriers? BMC Psychiatry 2010;10:103.
- Ennis L, Wykes T. Impact of patient involvement in mental health research: longitudinal study The British Journal of Psychiatry 2013;203:381-386.