Activism and Hope by Ed Kiely

Funding

2021-04-21 13:49:12 UTC

Maybe time to move towards funding approaches which do not exclude service user-led organisations which may be more effective than bigger organisations, just because they cannot bid on a large scale?

Q for Sam : Lifecraft funding cuts has parallels with Lifeworks being shut down by CCCG too

2021-04-21 13:51:44 UTC

The Lifeworks user led occupation and campaign mid 2010s led to five year stay of execution and retaining the day centre drop in for "complex cases" / people living with personality disorders in Cambridgeshire. The service was sadly closed last year and service users discharged back to primary care GPs despite the evidence their "diagnosis" / support needs are likely to remain permanent and don't show short term outcomes. Lifeworks like Lifcraft saved lives. Solidarity.

Uncertainty is harmful

LustStarrr — 2021-04-21 13:52:24 UTC

Leaving people with lived experience unsure whether their services will be their from week to week, due to funding issues, is cruel & unnecessary. Plan ahead!

Listen to people with lived experience

LustStarrr — 2021-04-21 13:53:59 UTC

People with lived experience should be at the forefront of decision-making, when designing & delivering your services.

Consult people who run and use services before putting out to tender. Recognise waste of tender/commissioning system that occurs on so many levels. If decision is made to stop funding, transition periods must be considered and supported. Use qualitative outcome measures to guide decisions around funding - people can say why things work or don't work for them. Smaller organisations may not have as much money but that doesn't mean they add less value. People with lived experience should be involved in tender decisions so that process isn't completely top down and disadvantages smaller, user-led organisations

2021-04-21 13:54:27 UTC

Give people with lived experience a seat at the table

LustStarrr — 2021-04-21 13:55:56 UTC

Lived experience perspectives should be given a place at the table, as equal stakeholders with service providers, in designing & delivering the mental health services upon which they rely.

Unionise

LustStarrr — 2021-04-21 13:57:07 UTC

Lived experience/service user unions or similar provide a unified front, & allow for organising & activism around the interests of people with lived experience.

Elections

LustStarrr — 2021-04-21 13:58:02 UTC

Provide how-to-vote cards, based on each party/candidate’s perspectives on mental health topics, to inform voters in the lead up to elections.

Be dynamic, technology-wise

LustStarrr — 2021-04-21 13:59:07 UTC

Platforms like Zoom provide great alternatives to real-life groups, for those able to access technology & the internet. Wildflower Alliance (formerly Western Mass Recovery Learning College) has created an online Discord community which is an excellent example of an online space created to replace the physical space they were running pre-pandemic. They also offer a bunch of groups online, in addition to their Discord server, all of which can be found here: https://wildfloweralliance.org/online-support-groups/

2021-04-21 13:59:23 UTC

One key thing is getting people registered to vote – I did a campaign on this during the general election in 2019. You can register to vote if you're under section which lots of people don't know. We need to mobilise so people know their rights

Create alternatives to the biomedical model

LustStarrr — 2021-04-21 14:06:25 UTC

Peer-run respites & warmlines, community-run crisis alternatives, & similar have great potential for good, & can be created to operate without the power disparity clinical services inherently embody.

Politics and activism

edwardmkiely — 2021-04-21 14:07:32 UTC

Samuel talked about engaging with the formal political system while Keira spoke about direct activism and creating new spaces outside of these systems. I was wondering what the panellists view is on the most effective way that service users/survivors should look to mobilise and organise?

We need data on the effectiveness of something other than biomedical interventions

LustStarrr — 2021-04-21 14:10:15 UTC

If we can prove the effectiveness of alternatives to traditional clinical interventions, we stand a higher chance of being able to receive funding grants, & being provided with spaces for service provision. Getting hard data on this would be fantastic, as would doing qualitative research on the lived experience of service users.

Keira: do you think there is a role for disorderly spaces in formal mental health services? Or do these spaces depend on rejecting formal services?

edwardmkiely — 2021-04-21 14:11:48 UTC

Keira - are there ways that mental health professionals in statutory services can learn from these user-led spaces to listen better and be with? (or is it just too hard because services are so focused on agendas and efficiency)

2021-04-21 14:18:09 UTC

2021-04-21 14:20:36 UTC

People's own explanations and understandings of themselves and their experiences is often more important than labels. Listening to them without judgement, rather than trying to get people to see psychiatry's version of reality

NICE Guidelines

2021-04-21 14:21:25 UTC

We need to raise the profile of qualitative data to match quantitative data in the eyes of the people writing health and social care guidelines (like NICE, etc.).

Liz – thank you for sharing your story. Sometimes services use the term resilience, but what they actually mean is discharging people and stopping them relying on services. How do you think this could be avoided?

edwardmkiely — 2021-04-21 14:24:55 UTC

Q for Keira - thanks for sharing your research in an thoughtful presentation. I wanted to ask whether that way of listening that you witnessed in the activist groups through your research has shaped also the way in which you listen and observed during your fieldwork? & following up, what do you think it is the potential of these spaces in transforming anybody who participates/transits through them?

2021-04-21 14:26:57 UTC

from Paola Debellis Alvarez

We need to look beyond stigma, & instead focus on the core issue - discrimination, & the denial of the human rights of those of us with lived experience

LustStarrr — 2021-04-21 14:28:01 UTC

Australian activist & advocate Fay Jackson said something along the lines of this at a conference a couple of years ago.

safe spaces for talking or just being

2021-04-21 14:35:19 UTC

@Sam @Liz @Keira : a common thread I heard from your talks was how important it is for people in mental distress to have safe spaces to be heard or just to be. But these are being cut as not appreciated fully by the medial model approach to mental distress. How can we push for a social model approach?

2021-04-21 14:35:28 UTC

If NHS / Health services / clinical services can't, can mental health orgs and charities be confident to hold disorderly spaces for their members?

My question is for Liz

2021-04-21 14:37:58 UTC

My question is for Liz. We still live in a materialistic era, in which spiritual explanations are not considered relevant to explain mental illness and psychoses in particular. According to your experience, what is the role of spiritual approaches in building resilience in mental illness?

A more holistic approach is needed, with improved availability and easy access to therapy and other healing modalities, such as meditation, yoga, art therapy and exercise.

2021-04-21 14:39:33 UTC

How can people who do not suffer from mental illness be educated so that they can break through the barriers posed by bureaucracy and the high stigma of traditional mental health?

2021-04-21 14:44:17 UTC

Mutual aid is excellent for building community

LustStarrr — 2021-04-21 14:49:23 UTC

Ensuring the basic needs of community members are met is an excellent way of building solidarity, & thus, community.

If health and social care providers and commissioners were democratically accountable to the local communities they serve, would this lead to a better quality of life for psychiatric survivors?

edwardmkiely — 2021-04-21 14:53:47 UTC

For Keira:

LustStarrr — 2021-04-21 14:59:06 UTC

Look into Emotional CPR training, to help clinicians unlearn some of their bad habits...

2021-04-21 15:11:19 UTC

Hello, we are students of the Austral University of Chile, we attend the congress and we want to ask the following question: How people who don't suffer from mental illness can also be educated so that they can break through the barriers of bureaucracy and the high stigma of traditional mental health?

Don’t assume funding will be there forever

2021-04-21 15:55:29 UTC

Have varied sources of funding and plan for what happens if you lose your biggest source of funding

Continuity of service

2021-04-21 15:59:07 UTC

Make sure, when services are recommissioned, old services are maintained until new services are up and running. This could have make a big difference in the case of Lifecraft.