Many Carers struggle with the apparent silence that may happen as soon as the ‘cared-for’ person starts to get appointments with the MH team. One day you know everything that is going on, while the next they are seeing people and being offered treatment, and you feel excluded. This is frustrating when you have all the history and often a more detailed knowledge of the situation, possibly more than the person themselves.
A professional is trained to consider a patient’s confidentiality as very important because it demonstrates respect for the person and their right to have control. It also helps form a successful relationship with them where they can be honest and this will help with diagnosis and treatment. But a Carer also needs to know information which will enable them to offer appropriate help both on a practical and an emotional level.
Making it clear to any professional that you are a major source of support is very important. This can be tricky if the unwell person themselves denies your relationship, but persist.
- You are their Carer and have different rights and privileges to other people who are acquaintances or who are just visiting.
You can attend appointments with the cared-for person if they want that, but it can be good not to go every time. There needs to be sensitivity about them forming helpful relationships directly with staff. Ask for time alone
with professionals if it is difficult to talk freely with the cared-for person present. Ask to see the person’s primary/named nurse if they are in hospital or their lead practitioner if they are at home. Many psychiatrists
will see Carers alone too; it is always worth asking
The next passage is taken directly from Sussex Partnership NHS Foundation Trust’s Carers handbook. Although this is now out of date the priniciples within it are still those that staff should adhere to.
All patients can decide what information is shared about them unless
-They are incapable of making that decision.
-Not sharing could lead to you as a Carer or someone else being harmed.
They can decide to share everything, nothing, or just some things.
This can only be overridden if it is justified by risk or if required by law.
Decisions about consent to sharing are recorded in a patient’s health records.
– It is not a breach of confidentiality to talk about information which a Carer already knows.
– Staff can also listen to what a Carer has to say about the person they care for even if they cannot answer specific questions.
– Anything you tell staff is also confidential unless you tell them it is all right to discuss it with another person.
– Just talking with staff and staff making conversation with you does not breach confidentiality.
The Carers handbook also states:
Where consent to share information has been withheld staff should discuss the implications of that decision with you and with the patient.
Decisions about sharing information are not fixed for ever. They should be reviewed, especially where a Carer’s level of involvement changes or the patient’s mental health situation changes.
Whatever level of privacy the person you care for wants, as a Carer you should get information about:
• mental health problems and where you can go to get more information.
• what treatments are available generally, how they work and what the potential side effects are.
• what services are available.
• what to do if you are concerned about the person you care for.
• who to contact in an emergency, including out of office hours.
• how best to cope with the effects of mental health problems at critical times, such as home leave and after the person has been discharged from hospital.
• what support would be provided if you were no longer able to care.
Staff should be aware of these principles and abide by them, but it can still be a struggle to get time with a busy professional. Staff can be unsure and lack confidence around talking to families out of fear that a complaint will be made by the service user.
In addition it can be frustrating that your ‘life or death’ crisis is a daily occurrence for them and they may not appear to be giving it the attention you feel it needs because they see many similar ‘emergencies’.
Being calm can be tough when you are worried sick, getting angry and no one seems to want to talk to you!