Sharing recent lived experience to help improve services
Written by Anne Lindsay, co-chair of our Early Intervention in Psychosis Advisory Group.
Anne Lindsay brings her professional and personal insights to the table as co-chair of our Early Intervention in Psychosis Advisory Group. In this blog, Anne illustrates through first-hand experience the importance of taking a person-centred approach to treatment and care. Anne also shows how sharing recent lived experience can help improve services.
As someone who has worked in mental health improvement for over 20 years, and, having lived experience of psychosis, I was delighted to accept the opportunity to co-chair the Early Intervention in Psychosis (EIP) Advisory Group alongside Dr Jane Cheeseman. I took up the role in November 2020 to bring my perspective to the multi-disciplinary group, which advises Healthcare Improvement Scotland’s EIP Improvement Programme.
Before my position as co-chair concludes at the end of March 2021, I want to share some personal reflections through this blog. Despite my professional experience in the mental health field, this role is the first where I have referred openly to my own experience of bi-polar disorder. It was not an easy decision to reach but having worked with so many others who have put their experience to incredible use, I felt it was the right step to take. I have appreciated having my views heard and valued in this process and I hope to encourage others with lived experience to contribute to national improvement programmes.
This first-hand experience of how good the right support can be when we take a person-centred approach, compared to how detrimental it can be when the patient’s view is not heard will never leave me." Anne Lindsay, co-chair of our Early Intervention in Psychosis Advisory Group
Intersected professional and personal experiences
First, it might help to explain a bit about my professional history and lived experience that led me to take up the co-chair role.
Before my career began, I had four admissions to hospital from the age of seventeen over a four-year period until a diagnosis of bi-polar disorder was finally agreed. In that time, I experienced significant side effects to the medication, was accused of taking drugs as an explanation for my symptoms and given several labels and diagnoses throughout that period. I was seriously assaulted by another patient and placed under intense observation at the start of each admission, which has had a lasting impact on my wellbeing.
Whilst some of the treatment in itself was unhelpful, there were elements that were incredibly beneficial. The hospital I was treated in as a young person used a therapeutic community model. The doors weren’t locked, there were work groups where we decided and cooked our own meals and psychodynamic therapy sessions you could attend as a choice. For a young person experiencing this as their first time away from home, this was a positive structure and respite that both my mum and I needed at that time.
Once my condition was stabilised, I was offered the chance to volunteer in a role that helped me use my knowledge and experience to support other young people in a safe and constructive way. This gave me an enormous sense of purpose and worth. I was inspired to study for a degree in Community Education, which meant I could develop a career in mental health improvement within community settings. I worked for five years in the South East of Glasgow, working in partnership with other agencies to develop and improve mental health support for the young people at that time and this had an incredibly positive impact on my own wellbeing.
In 2007, along with my partner, we moved to a more rural area and the following year, were fortunate enough to fall pregnant with our fantastic wee boy (already 12 and towering over me at 5ft 9”). This was thanks to the support we had received from the perinatal team in Glasgow where we had lived. We did all we could to prepare for a safe, healthy, drug free pregnancy and couldn’t wait to start our new life together as a family.
New location, different support
Unfortunately, when we moved home, this level of support did not transfer. All the work we had done to plan a safe pregnancy – with regard to my having bi-polar disorder - was completely disregarded and I was placed on the CP9 (Child Protection) spectrum. This was devastating and led to a number of very stressful meetings during my pregnancy where, in one instance, I wasn’t even addressed directly. Instead, they spoke to my husband and I had no voice in the process.
After our son was born, I became ill, which put huge pressure on my family and had a significant impact on the first six months that I spent with our son.
Lived experience as a mental health inpatient
A few years later, we tried for a second child and again I had to come off my medication. With a young child already, disrupted sleep and work to juggle, I became unwell on several occasions, which required a number of admissions. These experiences gave me deeper insights into how we deliver mental health services and what could be done differently.
I remember needing to be aware of how I presented my emotions in hospital, particularly frustration and anger, for fear of being further medicated - a situation that in itself increased my anxieties. I really struggled with being unable to get out of the locked ward despite the fact that I was a “voluntary” patient. When my son came to visit, he could see me waiting for him through glass-panelled doors but couldn’t reach me until someone was available to let them through and so often, staff were just so busy.
I would make him toys from literally rubbish – using discarded coffee cups, foil wrappers and the like as there were no toys for visiting children.
Visiting times ended at 4pm, just before the set mealtime. I would be so distressed after saying goodbye that I physically was unable to eat and then later, when my appetite returned, there would be no food available. Some staff recognised that I was struggling to eat on the hospital’s schedule and would keep a sandwich for me for me but not everyone was willing to show such compassion.
Throughout this period, I myself worked as a practitioner in a complex, child protection service, while still recovering from having been viewed as a risk to my son. I then moved on to work directly with people with lived experience, which presented a whole series of challenges in itself. During that time, one of the ladies I worked with took her own life, which contributed to me becoming unwell myself.
When I required an admission however, because I was a mental health practitioner in the area, issues around staff/patient confidentiality emerged, which led to me being moved several times to hospitals outwith my area. The whole experience was traumatic and unsettling for my family and myself but I maintain that, at these times, it is important for both the individual and their family to get respite from each other.
The importance of a person-centred approach
This first-hand experience of how good the right support can be when we take a person-centred approach, compared to how detrimental it can be when the patient’s view is not heard is what motivates me to want to get involved.
I am grateful to have the opportunity to share my experiences – to feed into programmes that aim to improve services for people experiencing psychosis. Intervention should be appropriate to the individual. There is no one size fits all in person centred practice, however, I am keen to see how learning from the different models will be applied in the next phase across our beautiful country.
Co-chair lived experience
Having the opportunity to co-chair an advisory group such as this has been exciting and challenging, not least because it happened during a pandemic. Having people with lived experience in these forums is so important because of the filter and frame of reference through which they are hearing the information being shared.
As a Chair however, this role could be limiting, as the very nature of the role is to facilitate and encourage discussion rather than be part of the discussions themselves but there is real merit to exploring ways in which people’s lived experience can inform all aspects of these developments.
Making it easier to share lived experiences
Solutions often sit with those who have direct experience. To support others to come forward so we can learn from their lived experience, we can:
- Build a supportive framework around the individual to safeguard their wellbeing, perhaps using an agency model or extending access to HR support.
- Pay for consultancy time and input - as opposed to having them volunteer – to give a greater sense of equality and accountability and clearer expectations of each individual’s engagement.
- Prepare the participant for any potential encounters with professionals that may have been part of their care at one time.
- Bear in mind it is more challenging for us to bring our personal experiences to the fore in discussions than it is for those referring solely to professional knowledge and skills.
- Equality of access to same resources / material as others involved and working with larger organisations
- Ensure that everyone starts the project at the same time with the same level of understanding, background knowledge.
- Ensure that all roles are clear and enable the individual to work to their full potential
I would like to thank Healthcare Improvement Scotland and VOX Scotland for giving me this opportunity. There is clearly a real desire to have people with lived experience actively contribute. To quote James Connolly, there are "None so fitted to break the chains as they who wear them.”
Find out more about our EIP improvement programme including our EIP report and recommendations (published March 2021).