The project is now at a stage where it is looking to bring information about people’s mental health to support this more joined up view. Leeds Care Record instructed Leeds Involving People (LIP) to ask views of service users and patients first. The purpose of the engagement was to understand from service users what mental health information they wish to share with other care professionals who are also directly involved in their care.
In November and December 2014, LIP and the Leeds Care Record team arranged and promoted two focus groups for members of the mental health community to attend. The focus groups were recruited using Leeds and York Partnership NHS Foundation Trust Service-User Network (SUN) and LIP’s contacts. A further focus group was conducted at the SUN group regular meeting. In addition there were five one-to-one interviews to allow for in-depth discussions and insight.
These results are being evaluated by NHS Leeds and York Partnership NHS Foundation Trust and the Leeds Care Records team, but are available to download, here. Overall, the participants were happy for aspects of their mental health information to be shared on the Leeds Care Record. They felt that it would make for smoother, more joined-up care. However, there should be caution taken with the amount of information shared.
There was a lot of discussion around a mental health diagnosis. The majority of participants had no concerns about it being shared, but those who did felt very strongly about it. They shared concerns about judgement from staff members treating their physical health based upon their mental health. This came particularly in relation to Personality Disorders. Those who had been living with their mental health condition for a long period of time, seemed to be accepting of their diagnosis. They also had an understanding that in times of crisis they aren’t able to make decisions for themselves, and that the healthcare professionals treating them need to know as much as possible about them in order to make the best decisions possible.
Participants expressed concern about the content of detailed, personal assessments being shared. Examples of this kind of assessment were the Holistic Assessment Tool and Risk Assessment tools. Some of the participants shared concerns about not being able to move on from bad patches of mental health if they were recorded in the Leeds Care Record. They felt that they may be judged unduly for behaviour that occurred many years ago, and that they should be able to move on from this. Carers said that they would like details on the LCR of the person that they care for, so that this person can be contacted in case of emergency. They said that they often attend appointments with the person that they care for, be it for their physical or mental health. Overall, the participants were happy for their information to be shared on the Leeds Care Record. They felt that it would make for smoother, more joined-up care and improve the decisions made by care professionals.
NHS Leeds and York Partnership NHS Foundation Trust have commissioned other work around sharing of information to aid discussions which is also available to download: Stigma of Mental Illness in Acute hospitals and Benefits of information sharing