Introduction

This factsheet offers advice and help to carers of relatives, partners or friends on how to understand confidentiality and information sharing issues. It sets out the standard of practice on information sharing that carers should expect from North Cumbria Integrated Care NHS Foundation Trust. (NCIC)

As a carer you may be the only constant support in the person’s life. It is therefore important you are given information that is relevant to the care that you provide. Carers should be given as much general information as possible about the illness being experienced.

Why information should be shared with carers

The sharing of information with carers is crucial to the ongoing well-being of both patients and carers. It is essential that carers are involved in important discussions about the care to be provided. When carers are given information about care plans and medication and advice on managing in a crisis, then they may be able to divert or reduce the impact of a difficult situation until other assistance is available. This is particularly crucial if this happens outside working hours.

What are the issues in information sharing?

Healthcare is a partnership between patients, families and professional care staff. The very sensitive nature of mental and physical health problems however, means that there can be particular difficulties in relation to confidentiality and the sharing of information. When a patient wishes to withhold information then these wishes must be respected by the professional staff responsible for the care. The carer must be informed whenever this is the declared wish of the patient. All staff working within the Trust are bound by law and professional codes of conduct to a duty of confidentiality to their patients.

Staff also have the same duty of confidentiality to carers under the General Data Protection Regulation (GDPR), Data Protection Act 2018, (DPA2018) the Human Rights Act 1998 and the common law Duty of Confidentiality. Our staff are given clear guidelines on information that can be shared and how consent is discussed, obtained and recorded. Good practice is that confidentiality is discussed at an early stage and views on information sharing are recorded.

How information can be shared

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 efficiently. (Department of Health: Developing services for carers and families of people with mental illness November 2002).

Even when the patient continues to withhold consent, carers must be given sufficient knowledge to enable them to provide care. Carers will be given the opportunity to discuss any difficulties they are experiencing in their caring role with the person’s healthcare professional. This must happen from an early stage. The provision of general information about mental or physical illness, emotional and practical support for carers does not breach confidentiality.

General information can include:

  • information about the condition and the behaviour which may result
  • advice on managing the behaviour particularly in a crisis situation
  • contact details of the Care Co-ordinator or main healthcare professional
  • background information on medication and possible side effects
  • information about the care programme approach and what it involves
  • contact details for local and national support organisations

To improve practice, the following approaches are also in place in the Trust:

  • staff will help patients to distinguish between sensitive and personal issues (for example, about their sexuality) which are to remain confidential and more general information about the illness which can be shared
  • issues regarding confidentiality will be recorded in the patient’s notes so that all staff are aware of any changes in the patient’s attitude regarding confidentiality
  • the use of advanced directives will be encouraged. These allow patients to plan their care when they are well, explaining what they would like to happen if they become unwell.
  • our staff will help service users to understand the benefits of sharing appropriate information with their carer
  • the Care Co-ordinator or main healthcare professional will provide carers with the support and help needed on issues relating to information sharing and confidentiality
  • carers must be encouraged to ask questions. Time must be made available to answer questions
  • professionals will involve carers in treatment plans and in major decisions about the patient

Carers have the right to be given information on:

  • background information about the condition and diagnosis, what behaviour is likely to occur and how to manage it
  • medication – benefits and possible side effects local in-patient and community services the Care Programme Approach (CPA) local and national support groups and services for both carers and patients

Carers are helped to understand:

  • the present situation
  • any confidentiality restrictions requested by the patient
  • the patient’s treatment plan and its aims
  • any written care plan, crisis plan or recovery programme
  • the role of each professional involved in the patient’s care
  • how to access help, including out of hours services

Carers are given the right to:

  • see a professional member of staff from the Trust on their own without the consent of the service user
  • confidentiality when talking to a professional
  • encouragement to feel like a valued member of the care team
  • confidence to voice their views and any concerns that they may have
  • emotional and practical support
  • an assessment of their own needs with their own
  • written care plan (if the patient has a serious mental illness or learning disability)

How to report concerns about confidentiality

The Trust takes the need to protect your personal information very seriously. If you feel that your confidentiality has been breached then you should raise your concerns through the Trust complaints procedure.

This can be done either by contacting the Complaints team in writing:

Complaints Team, The Pillars Building, Cumberland Infirmary, Newtown Road, Carlisle. CA2 7HY

Telephone: 01228 936302

Email: Complaints@ncic.nhs.uk 

Or by writing to the Chief Executive, North Cumbria Integrated Care NHS Foundation Trust, Cumberland Infirmary, Newtown Road, Carlisle, CA2 7HY

If you would like advice and support with dealing with any concerns or enquiries please contact the Patient Advice & Liaison Team (PALS) Team.

You can write to them at:

PALS, Cumberland Infirmary, Newtown Road, Carlisle, CA2 7HY

Freephone: 0800 633 5547

Landline: 01228 814008

Text: 07827 312 699

Email: PALS@ncic.nhs.uk

Confidentiality

‘The Trust’s vision is to keep your information safe in our hands.’ We promise to use your information fairly and legally, and in-line with local and national policies. You have a right to understand how your information is used and you can request a copy of the information we hold about you at any time.

For further information on confidentiality contact the Information Governance Team:

Information.Governance@ncic.nhs.uk | 01228 603961

Feedback

We appreciate and encourage feedback, which helps us to improve our services. If you have any comments, compliments or concerns to make about your care, please contact the Patient, Advice & Liaison Service:

pals@ncic.nhs.uk | 01228 814008 or 01946 523818

If you would like to raise a complaint regarding your care, please contact the Complaints Department:

complaints@ncic.nhs.uk | 01228 936302