According to EXTEND-InG
17 November 2022
Members of the EXTEND Involvement Group on why the EXTEND project is important and why they've got involved.
The quotes used on this website are taken from pseudonymised responses to two questions we asked member of the EXTEND-InG via email:
Why is the EXTEND project important to you?
“Having a defined length of time for EI as opposed to your need was something I was not aware of when I first engaged with the early intervention team . . . I found it a shock that this support would stop especially as I had psychotic episodes in January this year . . . It feels in personable that the decision is time focused and not person centric and I want to see if the balance can be changed. “ - Service user
“Whilst the EIP care that I received was fantastic. I felt the length of care I received was too short and left me feeling anxious and possibly led to my relapse . . . Extending the EIP care could potentially help many service users as well as enable health care staff to provide a better level of care . . . “ - Service user
“The EXTEND research project is very important to me personally as for the past two years our son has been under the care of EIT. I am particularly interested in this research project as it has the potential to shape the future direction of EIT. . . the project is highly focused on ensuring patient and carer voices are captured . . .” - Carer
“. . . to give my lived experience of EIT as a carer, the fight to get into the service and the disappointment of it not being a personalised service but more based upon a time frame.” - Carer
“I find that a one-size fits all approach is inadequate and some patients and families may need more or less support from early intervention services depending on the severity and duration of their psychosis. I am also keen to advocate for easier access back into services following discharge from early intervention services” - EI Service user
“I was referred to my local EIS after being discharged from hospital. At the time I did not know that irrespective of my needs the service would only be available to me for 3 years. For the initial year I struggled to open up . . . Luckily for the remaining 2 I had a genuine and compassionate Community Nurse that assisted me with feeling empowered by allowing me to take the reins on my recovery. While my recovery has had many peaks and troughs, I found that the support I urgently needed was after being discharged from the service.” - Service user
“My daughter experienced her first episode of psychosis when 'early intervention' was just a whisper . . . Back then I was passionate to challenge the orthodoxy of 'late intervention' that was our lived experience as a family” - Carer
Why did you want to get involved in the EXTEND study?
“I want to give back and use my experience of psychosis and recovery through early intervention in a positive way . . . If I can be part of the team that help [sic] make this change possible it would be a wonderful achievement . . .” - Service user
“. . . it feels very empowering to know you are helping shaping [sic] future service provision within psychosis services to benefit others.” - Carer
“I want to support research that endeavours to create a more tailored approach to providing early intervention services . . . I have personally benefitted from early intervention care and know its value and its impact on my health and recovery and also to my family, but I hope through EXTEND-ING care for early intervention services we can make it even better and improve the lives of many others. . .” - Service user
“. . . Lived experience reps have a realistic insight that professionals just don’t have. . . I am passionate about advocating for all those under EIT who have S117 after care rights” - Carer
“. . . I'm excited to be part of EXTEND's PAG to continue the challenge for a more nuanced approach.” - Carer
“I have been working with the trust doing patient as educator work, interview panels, talking to the board etc. and I have found it empowering to be back involved and feeling useful. - Service user
“Being a part of the EXTEND project gives me the opportunity to voice my concerns . . . While it is important to recognise that recovery varies depending on the individual, it should also be acknowledged that the length of time people require this kind of support is bound to differ too. In order for EIS to be person centred, they should take into consideration what length of time is conducive to the individuals involved in receiving EI support.” - Service user
“. . . to make sure that certain things are in place before people are discharged from early intervention because I don't want people to repeatedly become ill before things are sorted, like I unfortunately have.” - Service user