Synergi guest blogger Rafik Hamaizia explains his role as an expert by experience and reflects on how the position not only represents the stories of service users and carers, but facilitates co-production and power sharing in mental health services.

Synergi Collaborative Centre Stroke

Experts by experience in mental health services

Mental health services have for years taken a paternalistic approach to the people on the receiving end of care.

Psychiatry is arguably the only aspect of public health that has historically been based on coercion.  The detained mental health population are some of the most stigmatised and frequently traumatised groups in society.

Being detained under the Mental Health Act, based on personal experience, can feel like a hopeless and powerless situation. It is often the case that people receiving psychiatric treatment have limited freedoms and restricted access to the simple joys of life that others who are not subjected to these restrictions can sometimes take for granted.

For example, if you are in an in-patient service, even a simple trip to the shop can be denied or subject to a number of risk assessments, barriers, restrictions or the need to be escorted by staff.

The idea of doing things ‘with’ rather than ‘to’ people who are accessing mental health services has long been spoken of, but until recent times this has rarely been put into practice. Similarly, while satisfaction rates have been monitored for some time, such as the Friends and Family Test, it is difficult to identify what actually happens with these ‘surveys’ and how the findings translate into an improvement for service users individually.

One clinician told me that when he was a registered mental health nurse 20 years ago, staff would ‘mock’ him for involving service users in their own care planning. Today, this is an expectation which is embedded in national guidance and regulation.

It is now widely accepted that involving people directly in their care is not only the right thing to do ethically, but that it also has a profoundly positive outcome on people’s recovery, service improvements and quality of care.

One of the ways innovations within the industry around involvement has materialised has been through the role of the ‘expert by experience’. An expert by experience is somebody with lived experience (service user or carer) of accessing health and/or adult social care services. This role has been embraced by a diverse range of organisations, both nationally and internationally.

Experts by experience first came to national attention through the incorporation of the role as equal members within Care Quality Commission’s inspection teams. The role has since been embraced by both statutory and non-statuary organisations, such as NHS England, various third sector organisations, the Royal College of Psychiatrists, NHS trusts and the independent sector, among others.

The idea behind experts by experience is one of common sense. In mental health services, for instance, engagement can sometimes be a barrier and the role has demonstrated that service users are more likely to engage with people who they feel have lived through their own experiences.

Through the premise of empathy and a mutual understanding, experts by experience – who already bring a different and refreshing perspective – are able to gather invaluable feedback, which in turn drives quality improvements.

With what could be deemed as a form of peer support, experts by experience can instil hope into what can be a hopeless situation, as service users are able to physically see somebody like them ‘come out the other end’ of accessing services.

As somebody who has accessed a variety of mental health services, since discharge I have been an expert by experience within a number of organisations. The most notable for me is my current and longest standing role as the group expert by experience lead within Cygnet Healthcare, one of the UK’s largest independent in-patient mental health service providers.

In my current role, I work alongside the director of nursing to ensure service users have a voice at every level of the organisation. Having a designated role as an expert by experience, and working on a strategic level, is uncommon, particularly within the independent sector and in a non-tokenistic manner.

I visit our hospitals nationally, where I’m able to chat with service users and family carers directly on the ground. Here, I gather raw and unfiltered views through capturing direct quotes, stories and experiences of the people we care for. The feedback is then shared with the executive management board, other Cygnet sites and stakeholders, including commissioning and regulatory bodies.

This doesn’t only give the people within our services a voice, but it also supports the organisation’s efforts to be open and transparent. It gives those who are working on a strategic level, feedback directly from the ground, without having to go through a number of layers first, where feedback can sometimes become diluted before it reaches ‘the decision makers’. However, this work is only made possible by having buy-in from those at the top of an organisation.

At Cygnet Health Care, the support for co-production and experts by experience is apparent at every level of the organisation. When I first met our chief executive officer Dr Tony Romero, he told me the most simple but exciting thing: “Work alongside the people we care for and their families. Do good things. Challenge us to do better from their feedback, and if you need anything come to me.”

The relationship I have with Dr Romero is based on co-production, trust and power sharing. Being able to influence and challenge strategic decisions, policies and initiatives, based on the feedback from service users and their families, brings the power back to the people at the heart of our services.

When trying to embed co-production on a strategic level within any organisation, power sharing is one of the most important factors. This line of work undoubtedly comes with unique and complex challenges.

It makes it a lot easier when you have a shared vision and the same end goal: to ensure service users and their loved ones are involved in their care every step of the way.

Picture credit: Fancy Crave


About the Author

Rafik Hamaizia is the expert by experience lead for Cygnet Healthcare. Rafik, aged 25, has been a service user in a variety of mental health settings. His role within the Cygnet Healthcare is to work alongside the Executive Board of Directors to shape and improve service user involvement, co-production and patient experience structures on both strategic and local levels. In 2017 he was given the Cygnet Healthcare Special Recognition Award by Universal Health Services. He has participated in over 100 Care Quality Commission inspections and develops guidance with the National Institute for Health and Care Excellence (NICE). He is currently studying for an MSc in Mental Health Recovery and Social Inclusion at the University of Hertfordshire. Rafik is also the founding member of the Joint Thinking Initiative, a not-for-profit, service user led organisation, focusing on improving mental health care through co-production.
You can follow Rafik and his work on Twitter: @Raf_Hamaizia.