Rethink Mental Illness is a charity with a mission of leading the way to a better quality of life for everyone severely affected by mental illness, including their loved ones. One of their main areas of interest is reform of the Mental Health Act.
When the Mental Health Act was introduced in 1983, it was assumed that people severely affected by mental illness were not capable of taking an active role in their care or treatment. While attitudes to mental health, the deprivation of liberty, and the principles of involving people in their care have evolved significantly over the past 35 years, the Mental Health Act has not.
In 2017, Rethink Mental Illness conducted a survey on behalf of the Mental Health Alliance (a group of over 70 organisations with a common interest in the Mental Health Act) on the principles behind the Act. The research found that 80% of detainees felt unequally treated compared to physical illness.
Rethink Mental Illness identified the need to build on the findings from the Mental Health Alliance report through in-depth qualitative research. With a strategic partnership already in place between Rethink Mental Illness and Janssen, this was an ideal opportunity to move the research forward.
Good things come in threes
There was an initial assumption that a couple of focus groups was all that what was required. However, it was immediately clear to Janssen that a robust, multicentred project was needed to make it meaningful.
Adelphi Research UK was one of the healthcare research agencies that was approached for advice. Giles (Janssen) told Rachel (Adelphi) a compelling story about the research that was required and as budget was limited, requested a pro bono collaboration. Mental health reform is close to Adelphi’s values and this was a genuine example of patient-centricity and the opportunity to make a real difference to people’s lives despite the lack of budget.
At the same time, Theresa May had just appointed Sir Simon Wessely to conduct a full review of the Mental Health Act. With Rethink Mental Illness working with the Independent Review Team, they wanted to include the insights from the project. The importance of this research had suddenly ramped up tenfold. The pressure was on!
A bold approach
Adelphi devised a methodology with two main stages, firstly unpicking the problem and secondly co-creating the solution for legislative reform. The methodology involved a co-creation day, mobile research capturing personal video clips and individual telephone interviews.
The participants included service users that had been previously sectioned under the mental health act, their friends and family and a range of healthcare professionals such as psychiatrists, social workers and mental health nurses.
Alarm bells ring
It was a brave approach and one that was beset with multiple challenges from the outset. One of the main challenges was ethical considerations around recruiting and interviewing highly vulnerable people in this very sensitive area. As personal data including video clips were being collected and processed, there were also many important General Data Protection Regulation (GDPR) considerations that needed to be addressed.
In this pro-bono relationship, the classic roles of client, agency and sponsor went out of the window a bit at times and everyone mucked in. Giles Davey (Janssen) acted more as an agency colleague to Adelphi rather than the client and helped out with the moderating, workshop facilitation and the analysis. As Rethink Mental Illness was sourcing some of the participants from their membership, they had to learn the ropes of market research recruitment and compliance with GDPR.
Look for a licensed, experienced therapist, social worker, professional counselor or other mental-health professional with additional training in Mental health ACT. There is no special certification for ACT practitioners. Skills are acquired through peer counseling, workshops and other training programs. www.betterhelp.com has licensed therapists available to help you through any mental health issues you struggle with, on a secure, convenient platform, available to everyone.
The research highlighted a number of key areas worthy of consideration to ensure that the rights of people detained under the Mental Health Act are protected and overall care is improved. These suggestions include:
- Greater overall involvement of service users in their care via mandatory access to Independent Mental Health Advocate (IMHA) within 48 hours of admission (currently, service users have a right to access advocacy, but not within set timeframes)
- The standardisation of information provided to include more information on rights to tribunals and appeals, along with details of medicines and potential side effects
- A change to legislation on the appointment of the nearest relative, to give service users the right to choose their own representative
- Inclusion of advance decisions as a routine component within the care pathway and legislative changes that give legal weight to advance decisions.
Throughout the research, patients also referred to the culture and setting of their detention as if it were a prison. It was found that patients were regularly stripped of their rights and often had to earn back basic amenities, such as their shoes or a toothbrush.
Lobbying government for change
Initially Adelphi presented their findings to Rethink Mental Illness and Janssen. The findings were then presented to Sir Simon Wessely and other key decision makers from the government appointed independent review team. There were also representatives from the CQC, NHS England and a range of mental health charities including MIND and the Centre for Mental Health Research.
Adelphi and Rethink Mental Illness published the findings in their report ‘No Voice No Choice – making the mental health act more person centred’ on 1st May 2018. This was specifically timed to be released just ahead of the interim report from Theresa May’s independent review team.
Rethink Mental Illness is working with the Mental Health Review team to ensure that the issues raised about the law make their way into reform of the Act. An Early Day Motion (EDM) has been submitted to Parliament and so far the petition is going well – at the time of publication, 38 MPs have signed-up so far.
Rethink Mental Illness is running a public awareness campaign across multiple channels. Their work also continues with Janssen to develop tools and materials to support service users to take action and improve the extent to which they’re involved in their care.
This piece of research has demonstrated that important work can happen with the pro-bono support of agencies and partnerships with pharma. Pro-bono work is a hugely rewarding experience and although not something that can be commercially viable across all projects, with the right partner on the right projects it’s worth serious consideration.
Working with risks can be a bit daunting. However, with careful preparation and planning, even in this highly compliance driven environment, great things can be done to make a real difference in an area ripe for change.
Authors: Rachel Medcalf, Seb Newton Adelphi Research UK, Giles Davey, Janssen