Invisible Airs, Kate Rich & Lord Mayor of Bristol, Council Chamber Rooms, Bristol, UK

bnr#52 => Invisible Airs, Kate Rich & Lord Mayor of Bristol, Council Chamber Rooms, Bristol, UK


Note 1: I’ve got concerns; confidentiality is a thing of the past. ePJS used to be only in SLaM but now partners have access. I believe there may be work or connections with the Home Office, police, etc.

Note 2: ePJS is important because it’s multidisciplinary [across psychology, prescriptions etc.], but there may be some connections that are more about number-crunching, e.g. NDTMS. For example, the TOPS input section has questions about crime.

Note 3: Questions for the database may cause distress to service users, therefore, some answers may be vague or inaccurate as a result of feeling our way through the moment of filling these in.

Note 4: Some entries are a legal requirement. Others are outcome monitoring. The PHQ9 Form relates to recording depression within a treatment pathway. The GAD7 Form relates to anxiety. These aspects of patients’ treatment pathway may be recorded and pursued based on recommendations of key workers and psychologists. Sometimes there is no clear course for psychological intervention in a treatment pathway.

Note 5: In some respect, by choosing what forms and routes of treatment need to be undertaken, it’s possible that workers may take recommendations for changes to managerial meetings.

Note 6: Things have certainly changed over time: CORE-OM used to contain 34 questions, but CORE-10 now contains less. We wouldn’t want a system that changes too fast and we don’t want change that is ‘politically-led,’ e.g. from changes in government.

Note 7: There is so much information on ePJS that it can be difficult to extract.

Note 8: Service users don’t understand that this information is useful and necessary and can be used in emergencies.

Note 9: Information gleaned from service users is not always accurate. Often the things we sense or know but were not recorded are also passed on to key workers, like if service users look after children.

Note 10: Service users omit information through fear of state intervention against, say, looking after children. In these incidents, the information is passed on to key workers when it has not been recorded on the forms or ePJS. We discuss how the data, may fail to tell the story in its completeness, and how a more accurate or situated comprehension of a patient’s journey requires the reality of situations often revealed through testimony and everyday knowledge, memory etc.

Note 11: Sometimes when you know these people, it’s not what they are telling you, it’s what they are not telling you.

Note 12: Not sure where the data goes once entered into the database.

Note 13: My alcohol dependant clients have a high risk of death or of otherwise ‘failing’ according to the database, so putting their info in would affect metrics negatively.

Note 14: My service users have chaotic lives having to undergo more than one assessment, by more than one organisation - they would do a Foundation 66 assessment and then have to do another assessment at the centre. This makes them really wound up.

Note 15: Putting someone into the system means they are 'in treatment' but they hardly come in in some cases except for medication - this is more maintenance than treatment.

Note 16: Drug users managed by services which ‘represent’ them - 3 meals a day, 
(summary of conversation, not actual quotes):

G: Building is arranged in the way it was for political reasons, to maintain a service rather than to treat.
Staff: putting someone into the system means they are “in treatment” but that they hardly come
in in some cases except for medication - this is more maintenance than treatment.
Staff: There is a culture of dependancy at hostels like ****. Drug users managed by services which ‘represent’ them - 3 meals a day, easy access to needle exchange etc. makes life too easy, leads to a disinclination to change. If they are represented who can they fight against?

Note 17: Easy access to needle exchange makes life too easy, I think it leads to a disinclination to change.

Note 18: Mental health and drinking are interlinked. One in three service users have mental health problems (and the medicines they take can have horrible side effects) so they self-medicate with alcohol

Note 19: Social services look at people with mental health problems and say 'we can’t sort your mental health problems until you stop drinking'. People with drinking problems and chaotic lives could go to counseling sessions, release painful memories, go away and respond by drinking. Plus drinking distorts view of the world. Chicken or egg situation, but ultimately who is there to support these people who are reliant, who don’t want to stop drinking or cannot but who have underlying problems. The database does not account for this.

Note 20: If someone stops using (aka is successful) they are mostly moved outside Lambeth.

Note 21: Targets must be hit in order for the service to receive Local Authority funding.

Note 22: The service is grouped together with other organisations through the system.

Note 23: These compliance targets need to be logged and are automatically part of the framework - mandatory field completions - that the clinic uses to log people’s data.

Note 24: Service users are given carefully worded forms asking them to accept the use of their data for management purposes, for data-matching. I do not think service users understand this.

Note 25: It’s difficult to make the metrics relevant to the addictions clinic. The NDTMS stuff appears in a system that connects different services.

Note 26: The database is too thorough in some ways, not thorough enough in others.

Note 27: If someone calls in about a friend with alcohol dependency, the system is designed in a way that means the referrer needs a record set up about them. To get around this, the clinic notes referrals down on paper and only sets up records for the people with the dependency. They can also go down the route of something called an ePJS for third-party intervention.

Note 28: The government does not see the ambiguity of our work, but it is managed within the local service - the clinic has a strong managerial base.

Note 29: Make sure the data tail doesn’t wag the clinical dog.

Note 30: One thing everyone likes about the system is the way it stores clinical notes. Another good thing is that because different services are linked it’s easier to check client history. This is beneficial in some ways but also means more hoops to jump through.

Note 31: The database system is not geared around the end-user but around compliance. The clinic needs to comply with numerous organisations, e.g. the CQUINS, local commissioners, NHS England.

Note 32: We are always enacting procedures for compliance.

Note 33: Some things are very easy to ask (EPJ) to change and can be done very quickly, others are very hard to change or take a long time. The reasons for this disparity are not clear to the people who work with the system.

Note 34: A good commissioner would support the development of localised database systems that would allow the clinic to give feedback.

Note 35: There is political motivation and those with the political motives believe in the machinery

Note 36: Politicians criticise the service and the clinic’s methodology when results do not agree with them.

Note 37: A graph can be scaled up or down to make results appear to fit a narrative.

Note 38: Drug addicts are generally unpopular in the public eye: ‘the undeserving unwell’. Politicians are scared of showing support for them. This may be why there is such good data on addicts as opposed to say people with mental illness. Drug addicts are being overly managed by the machine.

Note 39: Why are incentives seen as bad in some contexts and not others? Parents give incentives to children and they learn. Why are incentives bad for addicts? The clinic uses incentives with success. People don’t think of incentives as a means to an end.

Note 40: The art of the job is hidden or prevented by the nature of the machinery getting in its way. The system doesn’t permit the ambiguity of key workers’ interpretation of service users’ individual experience.

Note 41: There is also nowhere within the system to elaborate on certain crucial details, e.g. service users’ individual stories and deeper details of domestic abuse or trauma. There should be an ‘at risk’ query in the data set.

Note 42: Connections to police database re child risk? There are ‘roles’ tied to Windows authentication. These are handled centrally by ICT at Leonard House in Bromley. This is also where new forms and sections can be added to EPJS.

Note 43: New forms and sections can be added as a result of factors such as new legislation. These are clinically-driven additions. The system appears to be evolving and is evidence-based in its changes.

Note 44: We are told that there is a bug in the system relating to a doubling-up of user entries if two entries with same birth date and postcode are input.

Note 45: RAG (Red Amber Green) - traffic lights warning system. This relates to the quality of the reports in the data (a colouring of the extent to which a report is detailed well enough).

Note 46: Clinicians can and are trained to spot these things. Yes under-reporting can be detected.