My Involvement

What should I expect when my loved one arrives at the service?

As carer, you can expect support and involvement from the point your loved one arrives at the service:

1.       Staff are welcoming in their interactions with you.

2.       Clear information is provided on the service, your loved one’s care and your involvement as a family member, friend or carer.

3.       You are given a named contact at the earliest opportunity and are offered a face to face induction meeting (or telephone meeting if this is more suitable for you) close to the point of admission, plus ongoing contact thereafter. This should include provision of key information that helps you familiarise yourself with the unit, cope with stresses you may experience at this time, and tells you what to expect.

4.       Be signposted to alternative forms of support, for your own practical and emotional needs for example independent carers’ advocacy services.

5.       Be provided a clear confidentiality and information sharing protocol which is positive and proactive and seeks to engage and involve you wherever possible.

Confidentiality and information sharing

Sharing information with carers

Carers provide important information that can help us have a better understanding of the needs of the service user. Therefore it is important we communicate well and work in partnership with carers and the service user. This is known as the triangle of care, ensuring effective care and better clinical outcomes.

Consent to share information

Sometimes there can be difficulties in relation to confidentiality and sharing information. When a service user wants to keep personal information private to themselves, then these wishes must be respected by staff. Staff members will:

·       Discuss with the service user what particular information they wish to keep private

·       Explain to the service user the importance and value of sharing information with those who care for them

·       Explain to you at an early stage what information can be shared, and if information cannot be shared explain the reasons for this

·       Answer any queries you make have on this topic

·       Ensure that you receive as much information as possible to help you in your caring role

Issues around confidentiality should not be used as a reason for not listening to you or for not discussing fully with the service user the need for you to receive information so that you can continue to support them.

Types of information

The ability to share information varies depending on the circumstances. Staff should check with you what information you already know, such as diagnosis and treatments, as any information you are already aware of is not to be treated as confidential. Providing you with general information about an illness or offering emotional and practical support does not breach confidentiality.

There are three different types of information:

·       General information includes literature already in the public domain such as leaflets, published materials and websites. The content may include information on physical and mental health conditions, medication and their side effects, relevant legislation, including the Mental Health Act, rights for service users and rights for carers, discharge information if this directly impacts the carer, information for local and national services, consent and confidentiality restrictions requested by the service user and how to access help and support

·       Personal information relates to specific information about the person you are caring for, for example the diagnosis, medication and its effects, the care plan, discharge care planning and contingency planning

·       Sensitive personal information includes information of a highly personal nature, details of previous sexual or emotional abuse, sexual activity, breaches of the law and the service users views about family members

When can confidentiality be broken?

Any decision to break confidentiality must always be made in the best interest of the service user and to achieve the best possible outcome for them. It is essential that staff explain to you how and why the decision to breach consent is in the service user’s best interest.

Where the service user withholds consent or lacks capacity and cannot express their wishes clearly, confidential information can only be disclosed in exceptional situations, such as where the service user’s or others’ health and wellbeing is under serious risk, or where there is a public interest or legal reason for disclosure without consent. Similarly, a carer’s confidentiality can only be broken in exceptional circumstances such as risk to their own or others’ health and wellbeing, public interest or for legal reasons.

Checklist: Information sharing

Carers are given
general factual information, both verbal and written about:

A diagnosis

What symptoms/behaviour may occur in people with this diagnosis, and how to
support the person

Medication – benefits and possible side effects

Local health services available

What different care and treatment might be used for people with this diagnosis
or health issue

Local and national support groups

Carers are helped to
understand (subject to the service user agreeing):

The present situation

Any confidentiality restrictions requested by the service user

The service user’s treatment plan and its aims

Any written care plan, emergency care/crisis plan or recovery programme

The role of each professional involved in the service user’s care

How to access help, including out-of-hours services

Carers are given:

The opportunity to see a professional on their own

The right to their own confidentiality when talking to a professional

Encouragement to feel a valued member of the care team

Confidence to voice their views and any concerns they may have

Emotional and practical support

Assessment of their own needs with their own written care/support plan