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

Factual information

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

Help and guidance

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

Additional Support

Carers are given:

Involving Carers in Quality Improvement (QI)

Quality improvement (QI) is a systematic approach that uses specific techniques to improve quality and achieve better outcomes.

It is used to solve complex problems by making step-by-step improvements

  • The focus is on introducing a ‘change’ (improvement) and a ‘method’ (an approach with appropriate tools), while paying attention to the context
  • It involves everyone in exploring the problem, considering possible solutions and testing changes


Model for Improvement

At Elysium Healthcare, we use a structured framework to support our QI work. As advocated for by the Institute of Healthcare Improvement, the Model for Improvement provides a consistent approach.

The model has two parts:

  • Three fundamental questions, which can be addressed in any order
  • The Plan-Do-Study-Act (PDSA) cycle to test changes in real work settings

The PDSA cycle guides the test of a change to determine if the change is an improvement

Involving service users and carers

A core part of QI work is ensuring that all voices are heard. Different people will have different perspectives and it is important that we consider all ways of thinking in how we deliver services.

Service users and carers offer a unique perspective on our services. Therefore, they should be involved as early as possible in any improvement work. QI projects that involve service users are four times more likely to achieve their goals than those that do not.


Big I and Little i

There are many ways of engaging with service users and carers in QI and ensuring that their involvement is meaningful. Within healthcare, this is referred to as Little i and Big I. It is important to mark the level of service user involvement in your project and what you are doing to achieve either Little i or Big I.

Little i refers to asking the people who use our services for ideas, what needs improving and whether they have noticed improvements, (following the completion of a project). This involvement may be as and when it is required, such as via a survey or a focus group.

Big I means involving service users and carers directly in your QI project, its development and delivery. Their involvement is full and continuous.


What is happening locally?

To find out about active QI projects and involvement opportunities, please speak to a member of staff at your service. They will be able to let you know of any current and upcoming projects and how you may be involved.


Further information

Science of Improvement: How to Improve | IHI – Institute for Healthcare Improvement