* All relevant sections to be completed by the responsible professional. In this context the ‘responsible professional’ means the professional who is responsible for obtaining consent to share with third parties, normally at Checklist stage. Since the Checklist can be completed by a range of professionals any of these could be the ‘responsible professional’ in terms of gaining consent for sharing information with Family, Friends and Representatives

Describe what steps have been taken to enable the person to make the informed decision themselves:(e.g. interpreter, communication aids, relevant information in an accessible form, consider time of day when their ability to understand is better, treating a medical condition which may be affecting their mental capacity, involving someone who knows them etc.)

Part 1 – Consent from Individuals Who Have Capacity.

Statement of consent to share information with Family, Friends and Representatives (Please refer to Part 5)

Please read this carefully (or ask someone to read it to you) and tick to confirm those statements below that you agree with. You have the right to change your mind or withdraw your consent at any time.

I consent to the people named in the table below being involved in my NHS CHC checklist/assessment process. I understand that relevant and necessary health and social care information about me may be shared with them for the purposes of this NHS CHC checklist/assessment process. I understand that I can withdraw or amend this consent at any time.

Or

I do not consent to any family/friends/representatives being involved in my NHS CHC checklist/assessment process. I understand that I can change my mind at any time.

Part 2 - Where the Responsible Professional has reason to believe that the Individual may lack capacity to consent for Information Sharing with Family, Friends, and Representatives

Mental Capacity Assessment / Record of Determination: 

In relation to the decision whether or not to share personal health and social care information with family/friends/representatives for the purpose of assessing eligibility for NHS Continuing Healthcare: 

(i.e. Were you satisfied that the person could understand the nature of the decision, why the decision needed to be made at the time and whether they could understand the likely effects of deciding one way or another or making no decision at all?)

(i.e. long enough to complete the decision-making process, including making and communicating their decision. Consideration should be given to the use of notebooks, photographs, videos, voice recorders, posters etc. to help the person record and retain the information)

(e.g. to consider the consequences, benefits and risks, of making the decision one way or another or making no decision at all? Understand the pros and cons)

(Verbally, using sign language or by any other means?)

PART 3a Lasting Power of Attorney or Court Appointed Deputy

In cases where an individual lacks capacity, consent to share with family and friends on behalf of that person will need to be sought from any person holding lasting power of attorney (LPA) for the individual. A LPA must be approved and registered with the Office of the Public Guardian. Proof of this status will be required.

An individual may have a court-appointed deputy (CAD) to act for them. Evidence of the status of the CAD should be sought and the relevant court order produced.

A person holding either of these positions is entitled to make decisions about sharing the individual’s information with family and friends.

Where an individual does not have a LPA or CAD, then a best interests decision must be made, as set out in the Mental Capacity Act 2005. This decision must take into account any previously stated wishes of the individual regarding information sharing (made at a time they had capacity), and whether the loss of capacity is temporary or permanent.

Statement of consent to share information

Please read this carefully and tick to confirm the statement below that you agree with. You have the right to change your mind or withdraw your consent at any time.

I consent to the people named in the table below to have access to individual's named in this form health and care records, for the purpose of supporting them with the NHS CHC checklist/assessment process. I understand that I can withdraw or amend this consent at any time.

Or

I do not consent to any information being shared with individual's named in this form family and friends. I understand I can change this decision at any time.

PART 3b: Best Interest Decision to Share Information with Family, Friends and Representatives:

If the individual lacks mental capacity and there is no-one with an LPA or a Deputy with the relevant authority (i.e. to make health and welfare decisions), a best interest decision must be made by the responsible professional. 

The Mental Capacity Act 2005: http://www.legislation.gov.uk/ukpga/2005/9/contents requires the best interest decision maker to consult with family/friends/representatives (and/or advocacy service if appropriate) before making a best interest decision. However, as noted in the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (see paragraph 92), “……The person leading the assessment is responsible for making this decision and should bear in mind the expectation that everyone who is potentially eligible for NHS Continuing Healthcare should have the opportunity to be considered for eligibility….”

Decision

If a request is received from anyone who is not the personal representative please find the links to the by guidance: Access to health and care records of deceased people here.

Part 4 - Consent to Share a Deceased Person’s Information

This section relates to retrospective checklists/assessments for NHS CHC undertaken after the individual has passed away. 

Once a person has passed away, someone will be appointed to manage their affairs. This person will be the Personal Representative (PR) of the deceased.

Anyone designated with next of kin status does not have access rights to information relating to the deceased, unless they have permission from the PR.

The PR must provide two forms of ID (see Annexe A). The PR should also have an original version, or a certified copy, of one of the following documents, as proof of their PR status (the address of the PR should also be included in these documents):

• a redacted copy of the will - showing who the Executor/Administrator is or
• a sealed Grant of Probate (GoP) or a grant of letters of administration - which is confirmation the applicant is in the process of obtaining authority from the Probate Registry

Once a person has proved their PR status (as outlined above), they have the right to decide who the deceased’s information is shared with (and can change or amend that decision at any time). 

Part 5: The below must be completed by the *Responsible Professional obtaining consent for information sharing with family, friends, and representatives:

Please tick all that apply

I have explained the NHS CHC process and purpose.

I have advised the individual and/or their Personal Representative of how their health and social care information may be used, and that it will be shared for this assessment process with a number of different health and social care professionals and, with agreement, relevant family/friends/representatives.

I have explained that if the Checklist indicates that a full CHC assessment is required, this does not mean they will necessarily be found eligible for CHC. Alternatively, where the Fast Track Pathway Tool is appropriate, I have explained its purpose and implications.

I have explained to the individual and/or their Personal Representative that they can withdraw or amend their consent (to share information with family/friends/representatives as part of the NHS Continuing Healthcare assessment process) at any time, should they decide to do so, as well as the potential consequences of doing this.

I have provided the individual and/or their Personal Representative with a copy of the NHS Continuing Healthcare and NHS-funded Nursing Care Public Information Leaflet.

Annexe A - List of identity verification documents

Verification of identity:

To verify your identity, please provide a total of two documents:

• one form of photographic personal identification and one document confirming your address 

A full list of documents that can be used to verify your identity can be found on the gov.uk website. 

Annexe B: NHSE CHC Consent Template Information Sheet - for Sharing:

This sets out the basis on which information is shared for the NHS CHC process.

NHS CHC and Information Governance:

NHS CHC Consent: The Legal BasisThe Legal Basis to process data for NHS CHC is covered in UKGDPR in the following articles:

• Article 6 – Public Task/Official Authority

“The processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller”

NHS CHC assessments are based on the NHS Commissioning Board and CCG Regulations 2012**, which create the official authority vested in the controller.

• Article 9 – Provision of care and support to a person 

“The processing is necessary for the purposes of medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems and services......"

NHS CHC assessments can determine the provision of health and social care to a person and help manage health and care systems.

NHS CHC and Common Law Duty of Confidentiality (CLDC)Personal Data +Healthcare data =CLDC

Confidential Patient information is required for NHS CHC assessment, so CLDC needs satisfying.CLDC is satisfied on the basis that NHS CHC assessments are a statutory requirement (as laid out in the 2012 NHS Commissioning Board and CCG Regulations 2012**)

Sharing information with family, friends or a third sector representative or advocate, supporting the individual, is not covered by the  NHS Commissioning Board and CCG Regulations 2012 **, so consent is required.

**The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012 (legislation.gov.uk) (Refer to Part 6)

Patient Level Data Set (PLDS):

NHS England and Integrated Care Boards collect information about individuals who undergo the NHS CHC assessment process (including personal data), for the NHS CHC PLDS, to help achieve better patient outcomes, better experience, and better use of resources in NHS CHC. 

The lawful basis for collecting this information is Article 6 (1) (c) of the GDPR enacted by the Data Protection Act 2018.

Please note that NHS CHC PLDS data is pseudonymised for analysis purposes. 

Detailed information about the use of individual’s identifiable data is publicly available at

https://digital.nhs.uk/about-nhs-digital/our-work/keeping-patient-data-safe/gdpr/gdpr-register 

For free, independent advice about NHS Continuing Healthcare please contact: 

Beacon CHC | Free Information & Advice - Beacon CHC

National framework for NHS continuing healthcare and NHS-funded nursing care - GOV.UK (www.gov.uk)