Confidentiality
BASW 2nd Year
16th December 2008
Carer’s Charter – Sussex Partnership NHS Trust – 2008
Confidentiality and Information Sharing
You, and the person you care for have the right to expect that information either of you provide to the trust will not be shared with other people without your consent. This includes information provided by you as a carer not being shared without consent with the person you care for and vice versa. This can only be over-ridden if justified through risk or if this is required by law.
Confidentiality will not be accepted as an excuse for not listening to you. You will be given sufficient information by trust services, in a way that you can readily understand, to help and enable you to provide care effectively.
Where consent to share information has been withheld, staff should discuss the implications of that decision with you and with the service user. Consent is not fixed and it is useful to revisit the subject, especially where a carer’s level of involvement changes or the service user’s mental health situation changes.
Partners in Care – The Princess Royal Trust for Carers – Training Resource 2005
Mike Shooter – Past President, Royal College of Psychiatrists - There have to be rules about confidentiality, of course, to protect the therapeutic relationship from trespass; but the balance between the patient’s rights to privacy and the carer’s need for information has often become so skewed that little is said at all. We rely on good-quality information from carer’s about the background to our patient’s illness……This should be met by good-quality information in return – about diagnosis, treatment options (side-effects as well as benefits) and prognosis; service structures, policies and personnel; what to be anxious about and what not, the care plan and the roles within it.
Examples of good practice – Department of Health – Developing services for carers of people with mental illness 2002
Issues around confidentiality should not be used as a reason for not listening to carers, nor for not discussing fully with service users the need for carers to receive information so that they can continue to support them. Carers should be given sufficient information, in a way that they can readily understand, to help them provide care effectively.
Advance Directives – the issue of confidentiality is discussed at an early stage when they are not acutely ill. Professionals encourage patients to understand the benefits of sharing appropriate information with their carer.
Even when the patient continues to withhold consent, carers are given sufficient knowledge to enable them to provide effective care. They are also given the opportunity to discuss any difficulties they are experiencing in their caring role and help try and resolve these. The provision of general information about mental illness, emotional and practical support for carers does not breach confidentiality.
Partners in Care Campaign was a joint campaign between the Royal College of Psychiatrists and the Princess Royal Trust for Carers 2004 –
One of the main aims of the campaign was to show that if all those involved in the care of people with mental health problems and learning difficulties can work together, a trusting partnership can develop between carers, patients, and professionals which will be of benefit to all.
Personal experiences around confidentiality
There is a tendency to focus on the client when we talk about the importance of confidentiality, but of course this should be extended to the rights of the carer too. I have no doubts that I want my medical records kept in a safe place, would only be read by authorised people who had an interest in my health issues. My son should also have this basic human right.
When there is mental illness, and many other illnesses, both short-term and chronic, the human rights issue around confidentiality gets a little more complicated, if we let it.
I mentioned the need to protect the rights of the carer with regard to confidentiality. I would like to tell you about my son’s psychiatrist who made a home visit in an attempt to persuade my son to come out of his mobile home where he had barricaded himself for several weeks. He had not opened the door to anybody, had covered the windows, and it was not clear whether this agitated state was due to him not taking his anti-psychotic medication for his chronic paranoid schizophrenia.
The Doctor was not successful; my son would not come to the door. I said I was very frightened by his silence, worried about what he might do, he kept the lights off at all times, and he was not even watching his television. It was a worrying turn in his behaviour, because a week or two before that he was shouting in his home at the top of his voice, for hours on end. It was a though he was shouting at another person, and trying to drown out their voice. I had told the team members about this when they called each week to post his medication through his door. I had told them this about my son so that they would be aware of his state of mind, they could inform the psychiatrist so that he could consider some sort of intervention, to relieve my son’s obvious distress. Then the Doctor told me he had told my son that I had spoken of his shouting. I was stunned. I said please don’t pass things like that on to my son, it will make him turn against me, he will think I am trying to get you to hospitalise him. He just said that he had to tell him where he had heard this from, his staff had not heard him shouting, and there was nobody else. He saw no reason for my protestations. Later I felt angry about this betrayal.