Carers (Scotland) Act 2016: statutory guidance - updated July 2021

Part 4: Carer involvement

Chapter 1 – Carer Involvement in Services and Service Planning

Summary

Section 27 requires local authorities and health boards to involve carers and persons representative of carers in the carer services they provide. 'Carer services' are defined to include both services to carers and services to cared-for persons. 'Involvement' is defined to include involvement in considering what needs might call for services, what services might be provided to meet those needs, and how those services might be provided and evaluated. This ensures the involvement of carers at a strategic level in the design and delivery of services.

Sections 29 and 30 amend other legislation so as to require local authorities to involve individual carers in decision making at an individual level.

Section 29 amends section 1 of the Social Care (Self-directed Support) (Scotland) Act 2013. The amendments provide that carers must have as much involvement as they wish in the assessment of their needs and the provision of support under the Carers (Scotland) Act 2016.

Section 30 amends section 12A of the Social Work (Scotland) Act 1968 and section 23 of the Children (Scotland) Act 1995. The amendments require local authorities to take carers' views into account in assessing the needs of the cared-for person and in deciding whether and how to provide services to the cared-for person.

Section 28 deals with carer involvement in hospital discharge of cared-for persons. This is covered in the next chapter of this guidance.

The duty under section 27 applies to local authorities and health boards but is not required to be delegated to integration joint boards as integration joint boards already have responsibilities to ensure carer involvement under the Public Bodies (Joint Working) (Scotland) Act 2014.

For the purpose of this chapter the terminology 'local authorities' and 'health boards' will continue to be used in place of integration joint boards or integration authorities.

Purpose of carer involvement

4.1.1. The Act strengthens the existing commitment to the principle of carer involvement in the development and delivery of services supporting both carers and cared-for persons at both strategic and individual levels. It does this through a combination of free standing duties in the Act and amendment to other relevant legislation.

4.1.2. At an individual level, the expertise and knowledge of carers can be seen as a vital resource to help inform the design and delivery of relevant care and support services. As such, the principle of carers as equal and expert partners is important. This is especially pertinent in the case of carer groups with particular needs or sensitivities; for example, specific considerations relevant to carers from minority ethnic communities.

4.1.3. The National Carers Strategy 2010-2015^[119] articulated Scottish Government policy of carers being viewed as equal partners in care. The established Equal Partners in Care (EPiC) framework states: 'Carers have a unique role in the life of the person they care for. When we are planning and delivering care for that person, it's important that we involve their carer. They have valuable knowledge to contribute and any decision will have an impact on their caring role. Carers, the person they care for and workers from health and social services should work together as partners to achieve better outcomes for all involved.'

Form of Involvement

4.1.4. Carer involvement can take many forms, including informing carers and carer representatives of relevant information relating to the range and types of carer services available to them. It can also empower carers and carer representatives to make informed decisions, as with the shaping and delivery of any personalised support using the four options of Self-directed Support.

4.1.5. Shared Care Scotland has published a toolkit^[120] for consulting and engaging with stakeholders on short breaks that contains a range of different tools with which to seek involvement from carers and people who use services.

4.1.6. Authorities may wish to consider appropriate forums for sharing learning and experiences both between carers and between authorities, including information hubs, Carer Leads meetings and where appropriate, social media.

Duties to involve in carer services

4.1.7. Section 27 requires local authorities and health boards to take such steps as they consider appropriate to involve carers and such persons and bodies representative of carers in the planning and evaluation of carer services.

4.1.8. 'Persons and bodies representative of carers' may include third or voluntary sector organisations. Authorities are strongly recommended to work closely with such organisations in developing services.

4.1.9. Under section 27(4) 'carer services' are defined as services provided or to be provided by the relevant authority to carers (in relation to the care they provide, or intend to provide), or to cared-for persons (in relation to the care they receive).

4.1.10. Certain services are excluded from the duty to involve carers by virtue of section 27(5), to avoid duplicating existing requirements to involve carers in these cases. These are:

• services which are contained in a children's services plan (within the meaning of section 8 of the Children and Young People (Scotland) Act 2014 if the persons mentioned in section 27(3) of the Carers Act have been consulted in relation to the preparation of that plan; and
• services provided by virtue of functions which have been delegated under an integration scheme (within the meaning of section 1(3) of the Public Bodies (Joint Working) (Scotland) Act 2014) or which are to be carried out in conjunction with those functions – as integration authorities already have similar responsibilities to involve carers under the 2014 Act.

4.1.11. 'Involvement' is defined in section 27(6)(a) to (d) to include involvement in considering what needs might call for services, what services might be provided to meet those needs, and how those services might be provided and evaluated. This ensures the involvement of carers at a strategic level in the design and delivery of services.

4.1.12. This includes involvement in the decision making process for the setting of local eligibility criteria.

4.1.13. In looking at what services might be provided, carers would be involved in considering:

• what services or assistance could be provided to cared-for persons other than care for the cared-for person (e.g. equipment and adaptations or mental health services);
• what general services might be provided such as information and advice (under section 34); and
• what other general services available universally in the community (e.g. youth clubs or leisure centres).

4.1.14. In looking at how services might be provided, carers would be involved in considering:

• provision through the commissioning process of support services; and
• provision at an individual level in design and delivery of support to the carer and/ or the cared-for person.

4.1.15. Looking at evaluation of services might include carers being involved in considering how evaluation of carer services may form part of a relevant authority or service provider's practice of continuous improvement.

Timing and level of involvement – individual cases

Carer involvement in assessments and support to carers

4.1.16. Section 1 of the Social Care (Self-directed Support) (Scotland) Act 2013 (as amended by section 29 of the Act) requires authorities to have regard to the principles in section 1^[121] of that Act when carrying out functions relating to adult carer support plans, young carer statements, eligibility criteria and the duty to provide support to carers. These principles are:

a) a person must have as much involvement as they wish with regard to their needs assessment and support provision;

b) a person must be provided with any reasonable assistance to enable them to express views the person may have about the self-directed support options or make an informed choice about the options; and

c) a local authority must collaborate with a person regarding a person's needs assessment and support provision.

4.1.17. Statutory guidance^[122] produced to support the Social Care (Self-directed Support) (Scotland) Act 2013 elaborates on the core values and principles of care and support in section 1.

4.1.18. This requirement for carer involvement applies to all stages of a carer providing, or intending to provide, care and to all local authorities and health boards.

Carer involvement in assessment and provision of support to cared-for person

4.1.19. Section 30 of the Act amends both section 12A of the Social Work (Scotland) Act 1968 and section 23 of the Children (Scotland) Act 1995. The amendments require local authorities to take carers' views into account so far as it is reasonable and practicable to do so in assessing the needs of the cared-for person and in deciding whether and how to provide services to the cared-for person.

4.1.20. The amendments at section 30(2) to (4) incorporate the principles of carer involvement into section 12A of the Social Work (Scotland) Act 1968^[123]. Section 12A(1B) of the 1968 Act (as amended) requires that as far as it is reasonable and practical to do so, a local authority must take account of the views of the carer when:

a) assessing the needs of the cared-for person;
b) deciding the need for support; and
c) deciding how any support services are provided.

4.1.21. The amendments atsection 30(5) to (7) incorporate the principles of carer involvement into section 23 of the Children (Scotland) Act 1995^[124]. Section 23 of the 1995 Act (as amended) requires that as far as it is reasonable and practical to do so, a local authority must take account of the views of the carer when:

a) assessing the needs of the child being cared-for;
b) deciding the need for support; and
c) deciding how any support services are provided to that child.

4.1.22. The level and means of carer involvement in these decisions about the cared-for person can be determined on a case-by-case basis and may require professional judgement from those involved. There may be conflicts between the wishes of the carer and the cared-for person. Sometimes the cared-for person will not accept services to support them, which may in turn place an additional burden back onto the carer.

Involving young carers

4.1.23. The duties to involve carers apply equally for young carers. They apply to strategic planning, particularly for the design and provision of young carer specific services, and to individual assessment and decision making.

4.1.24. Different considerations and approaches will be relevant for the involvement of young carers. In this context, the aim of authorities would be to minimise the impact of their caring role on the young carer's life, and to provide alternative support to the cared-for person that minimises the need for the young carer to act as a carer, taking into account their age and maturity.

4.1.25. There is a risk that, in supporting young carers in their caring role, authorities could inadvertently perpetuate inappropriate levels of caring by the young person. Young carer input and involvement will be a particular consideration in ensuring this does not happen.

4.1.26. Authorities should recognise that in some situations, young carers may wish to continue to care for someone, but require to be supported sensitively with the aim of minimising the impact of their caring on their wellbeing indicators in line with the Getting it right for every child approach^[125].

Chapter 2 – Carer involvement in hospital discharge of cared-for persons

The terminology 'patient' is used throughout this chapter of the guidance in place of 'cared-for person'. This is to place it in the context of the hospital setting. 'Cared-for person' will be used only when quoting and paraphrasing the legislation.

This chapter is not intended to provide guidance on all aspects of hospital discharge and other associated processes. Instead, it provides statutory guidance on the key aspects of the duty placed on health boards at section 28 of the Act along with some suggestions and recommendations on how to meet the duty.

There are many other local and national guidance and best practice documents that comprehensively cover many different aspects of hospital discharge planning, many of which are referenced in this chapter.

Summary

Section 28(1) and (2) requires each health board to involve the carer before a cared-for person is discharged from hospital. It must do so by

(a) taking steps as it considers appropriate to: inform the carer as soon as reasonably practicable of the intention to discharge the cared-for person; and invite the views of carers about the discharge; and
(b) taking account, 'so far as it is reasonable and practicable to do so', of any views given by the carer in making decisions relating to discharge of the cared-for person.

Section 28(3) provides that this duty only applies where:

• the carer of the cared-for person can be identified 'without delay'; and
• where it appears to the health board that the cared-for person is likely to require care following discharge.

The duty under section 28 is subsidiary to any hospital functions delegated to integration joint boards. That means that where hospital functions are delegated to joint boards, the subsidiary duty to involve carers under section 28 will automatically be delegated. In these cases, although the duty applies to health boards and the State Hospital Board for Scotland, in practice it will be implemented by health boards, the State Hospital Board and local authorities working together under the direction of the integration joint boards. This approach will ensure that the functions are exercised in an appropriately integrated way, joining up support for professionals, patients and carers. Where hospital functions are not delegated to joint boards, the subsidiary duty to involve carers under section 28 will not be delegated either.

For the purpose of this chapter, the terminology 'health boards' will continue to be used in place of integration joint boards or integration authorities.

Definition of hospital

4.2.1. A hospital in the context of this duty is a 'health service hospital' as defined in section 108 of the National Health Service (Scotland) Act 1978 (as amended)^[126]. The duty is also placed on State Hospital Board for the state hospital in Scotland as defined in section 102 of the 1978 Act^[127].

4.2.2. Community hospitals are included within this definition.

4.2.3. This duty does not apply to private hospitals in Scotland unless they are providing NHS treatment to the patient, in which case it is the health board responsible for the patient that has responsibility to ensure the duty is complied with.

Definition of discharge

4.2.4. There is no legal definition of a hospital discharge. Health boards are encouraged by the Scottish Government to prepare an Admission, Transfer and Discharge protocol (ATD). This will be an agreed protocol for use in NHS facilities. The Scottish Government has published a Framework for the Production of Joint Hospital Discharge Protocols^[128].

4.2.5. It is recommended to consult the local ATD protocol or seek advice from the relevant health board if unclear about the discharge process in an individual setting or locality.

4.2.6. It is generally understood that when a patient has finished their course of treatment or medication and a doctor has assessed they are fit to leave hospital, they will be clinically ready for discharge.

When this duty applies

4.2.7. The duty applies in situations where:

• either:
  • The identified carer is an adult carer or a young carer (as defined at section 1 of the Act); or
  • an individual is identified who intends to provide care to a patient post-discharge; or
  • the individual is providing or intends to provide care but does not self-identify as a carer; and
• professionals consider it likely that the patient will require care from a carer following discharge; and
• a formal discharge process takes place.

4.2.8. There are settings, such as Assessment Units, in which it can be more ambiguous whether patients require a formal discharge. In such cases no absolute rule should be applied and each case dealt with on an individual basis.

4.2.9. Neither the nature nor amount of the care estimated to be required following discharge of the patient from hospital should affect whether the hospital involves the carer in the discharge process.

4.2.10. The health board discharging the patient may not be the board for the area where the patient resides. Where this is the case, the health board discharging the patient must still apply this duty.

4.2.11. The duty applies regardless of the patient's discharge destination. It may be the case that a patient is to be discharged to a different place from where they were living before they were admitted to hospital. For example, an individual who had previously been living at home might be discharged to a care home, another NHS facility for further treatment, or to a lower security hospital.

Exceptions – Outpatients and A&E

4.2.12. The duty does not apply if the patient is an outpatient or is attending A&E.

Mental Health

4.2.13. In relation to mental health, the duty does not apply if the patient has a suspension of detention or has received conditional discharge under the Mental Health (Care and Treatment) Act 2003 (the '2003 Act').

4.2.14. It is not necessary for the section 28 duty to apply here because there is already a separate duty to have regard to carers views under section 1 of the 2003 Act. This requires any person undertaking a function under the 2003 Act, to have regard to relevant views of any carer about that function. For discharge, this includes suspension of detention or conditional discharge. The Code of Practice Volume 1 for the 2003 Act goes into further detail on the requirement to take consideration of the carers' situation and needs, 'so far as is practical and reasonable'^[129].

For information

Suspension of detention can apply to individuals who are detained in hospital under the Mental Health (Care and Treatment) Act 2003. It enables the Responsible Medical Officer (RMO) to suspend a person's detention, to allow greater freedom and a better quality of life, while still providing the care and treatment he or she needs. Generally, suspension of detention must be authorised by the RMO for any time a detained patient spends outside the hospital grounds.

Conditional discharge allows a period of formal supervision of a patient in the community by closely monitoring his/her mental health and behaviour for any indicators of increased risk to others so that steps can be taken to assist him/her and protect the public. It also allows a period of assessment of the patient in the community before a final decision is taken on whether to remove the safeguards and control imposed by the restriction order by means of an absolute discharge.

Why involve carers?

4.2.15. There is evidence to suggest that there has been a significant increase in recent years of post-discharge care being provided by unpaid carers^[130]. It is believed that if the hospital discharge is handled in a positive way and involves the carer, this can help with patient recovery and improved outcomes as well as preparing the carer for the care provision to be transitioned back into the community^[131].

4.2.16. Professionals involved in discharge planning may not be aware of all aspects of a patient's requirements and wishes. Carers often have detailed knowledge of the patient's medical and social care history as well as an understanding of other relevant issues and personal beliefs. This knowledge can aid professionals who are making decisions around discharge and appropriate after-care and support arrangements.

4.2.17. Evidence shows that the involvement of carers in hospital discharge planning can reduce the risk of delayed discharge and readmission^[132]. There is a large cost attached to the provision of additional, perhaps unnecessary, support to someone who has been readmitted to hospital or whose discharge has been delayed.

4.2.18. It is important that the carer feels prepared for the hospital discharge of the patient. Being informed and involved in the process can reduce the risk of negative impacts on the carer's health and wellbeing and produce better outcomes for the carer overall.

4.2.19. Through the involvement of the carer in the hospital discharge process, carers are likely to be better supported through signposting to and awareness of appropriate support and services available to both themselves and the patient.

Workforce readiness

4.2.20. Health boards are encouraged to ensure their local guidance is up to date in relation to the new duty. It will be the responsibility of the health board to ensure that professionals are aware of the duty and have the required training to allow them to meet it.

4.2.21. The Equal Partners in Care^[133] (EPiC) national framework contains an online learning resource which can be used by all professionals to develop their skills and knowledge to enable them to actively involve carers in the care of the cared-for person at all stages of the planning and decision making process.

4.2.22. Although the duty is placed on health boards, it would be expected that health, social care and third sector professionals would work together to ensure that patients and carers are supported.

Involving the carer

4.2.23. The health board must take 'such steps as it considers appropriate' to meet the duty at section 28. As such, professionals will be required to exercise judgement in certain cases, including where concerns in relation to the carer about child or adult protection have been raised.

4.2.24. In order to involve the carer, it would be expected that a discussion would take place between professionals, the patient and the carer if possible. Professionals may wish to provide information to the carer on what they might reasonably expect to happen during the hospital discharge process and how they should be involved.

Example

The Triangle of Care^[134] model of carer involvement has been developed by Carers Trust Scotland, particularly for use in mental health settings, but is a transferable tool. Its aim is to encourage improved engagement and collaboration between service user, carer and professional. The Triangle of Care details six key standards that are required to achieve better collaboration and partnership with carers in planning for the patient's care. These are:

1) carers and the essential role they play are identified at first contact or as soon as possible thereafter;
2) staff are 'carer aware' and trained in carer engagement strategies;
3) policy and practice protocols relating to confidentiality and information sharing are in place;
4) defined posts responsible for carers are in place;
5) a carer introduction to the service and staff is available, with relevant range of information across the care pathway; and
6) a range of carer support services is available.

Planned and unplanned admissions

4.2.25. In cases where hospital admission is planned, such as pre-planned operations, the involvement of the carer in hospital discharge may have begun before the patient is admitted to hospital. Discussions with GPs and other professionals in order to plan for the admission may include the carer where appropriate. This is likely to include an element of anticipatory care planning^[135]. It may be useful for professionals in the hospital setting to identify if any such plans have been produced when they begin to involve the carer in the discharge planning process.

4.2.26. It would be helpful for professionals to identify whether an emergency plan is in place where the patient's hospital admission is not planned. This may have been produced in conjunction with the carer and detail useful information.

Who is the carer?

4.2.27. If a patient has more than one carer all identified carers must be involved in the discharge process. If for whatever reason it has not been possible to identify all carers of a patient where it is known that a patient has more than one, then the duty is intended only to apply in respect of the carer(s) identified 'without delay'.

4.2.28. Professionals must not assume that the most frequent visitor, the next of kin or a patient's welfare guardian have a caring role for the patient. It would be expected that introductory conversations with family and friends would seek to identify whether or not there are any caring responsibilities without making any prior assumptions.

Specific Considerations

4.2.29. There will be specific considerations for the health board to take into account in certain situations in order to meet the duty. In rural and remote areas this might include consideration of whether carers may be unable to travel to the hospital to visit the patient. In this situation it may be appropriate to call the carer at home instead of assuming they will be able to travel to the hospital. Where the carer is a young carer they may not be available during school hours.

Identifying the carer 'without delay'

4.2.30. Section 28 of the Act only applies when:

• the carer can be identified 'without delay' ; and
• where the patient is likely to require care following discharge. This applies in circumstances including where the care need has increased, decreased or stayed the same or if the nature of care required has changed.

4.2.31. It is expected that professionals would take steps as early as possible after a patient's admission to identify whether they have a carer if this is not already known. In doing so, professionals may wish to consider the most appropriate approach.

Example

Professionals may wish to ask the patient if they have a carer or when speaking to patient visitors, ask whether they or someone they know undertakes caring responsibilities.

4.2.32. A family member or friend may have been providing care for a period of time prior to the patient's hospitalisation however does not self-identify as a carer. This could be for a number of reasons^[136], including because they do not recognise the term as being relevant to their situation or they are unsure of its meaning. In this case, the individual may not respond positively to professionals using certain terminology and language.

4.2.33. Professionals should be aware that using alternative language may help with identifying whether or not they have a caring role. For example: 'do you look after…' or 'do you provide any support to…'.

4.2.34. Professionals should not place pressure on the individual to self-identify as a carer however professionals may wish to signpost them to further information and support.

4.2.35. There may be situations where it is not possible to identify a carer. For example, where communication between health professionals and the patient is difficult, or where the patient has been living independently prior to admission and does not therefore have a carer.

Informing the carer

Timing

4.2.36. The carer must be informed 'as soon as reasonably practicable' of the intention to discharge the patient. This means the carer should be informed of the intention to discharge the patient as soon as possible when they are considered clinically ready to be discharged. That might be soon after the patient's admission or it might be later during the hospital stay but will vary depending on the individual situation.

Method

4.2.37. Appropriate methods of informing carers about the discharge of the patient will be a decision for the health board however the method of doing so is likely to depend on the individual situation. It is good practice to give consideration to the carer's circumstances when identifying the most appropriate way to inform the carer.

Example

If a carer is often present on the ward, the most appropriate method may be for professionals to approach them to make them aware of the intention to discharge, or alternatively scheduling a phone call to inform the carer if they are at home.

Inviting the carer to give views about the discharge of the cared-for person

4.2.38. Identified carers must be invited by professionals to give their views about the discharge of the patient. Professionals may prompt the carer to provide these views at an appropriate time. This is likely to take place before the patient is declared medically fit for discharge.

4.2.39. Professionals are encouraged to be mindful of how a carer may be feeling as a result of the patient being admitted to hospital and be sensitive in their approach to seeking views.

4.2.40. The method for obtaining the views of the carer will be dependent on the individual situation.

Example

The carer may be invited to the hospital to give their views, however a discussion over the telephone may suffice.

4.2.41. Professionals should be aware that carers will have different levels of understanding of the medical treatment (medicines, special diets, aides and adaptations etc.) the patient is receiving. Treatment may have changed during the patient's stay in hospital. It is important that carers are fully informed of the patient's updated medical situation before taking their views as this may impact on a number of things, including suitability of the discharge destination and their willingness and ability to care.

4.2.42. It may be that a carer has been identified at an earlier stage and views about the hospital discharge have already been provided prior to the patient being clinically ready for discharge. In this case, it would be good practice to revisit any views given at an earlier stage prior to the discharge, especially if the patient or carer situation has altered.

Example

Health boards may wish to consider using the exchange model, an approach to conversation often used by social workers that recognises people are 'an expert in themselves'. If the carer is unsure about the sort of views or information that might be appropriate to share in relation to hospital discharge, professionals may wish to prompt them with questions.

Taking account of any views given by the carer

4.2.43. The health board must take account of the carer's views 'so far as it is reasonable and practicable to do so'. There will be circumstances where it may not be reasonable and practical to take account of their views. This might happen if the carer is out of the country and staff are unable to get in contact with them by the time the patient is clinically ready for discharge.

4.2.44. Where there is more than one identified carer invited to give views and these views are contradictory, it would be expected that professionals will work together, having taken both sets of views into account, so far as it is reasonable and practicable to do so, to identify the most appropriate course of action for the patient.

4.2.45. Professionals are expected to work towards meeting the target of discharging the patient within 72 hours of being clinically ready.

4.2.46. As is current practice, the health and safety of the patient will be the primary consideration when taking account of the views of the carer. Health and social care professionals will be expected to use their professional judgement by asking the primary eligibility question for discharge: 'can this individual's care needs be properly met in any other setting than hospital?'

4.2.47. If a carer is unhappy about a decision made regarding the patient's discharge after having given their views, it may be consideredappropriate to have a conversation with the carer to explain the reasoning behind the decision. It might be helpful to provide information to the carer on any additional support for themselves or the patient to enable them to care for the patient post discharge.

Young carers

4.2.48. The intention of the Act is that young carers are able to be children and young people first and foremost and are protected from undertaking inappropriate caring responsibilities.

For Information

Professionals may wish to consider the following when the carer is a child:

• whether the young carer understands what hospital discharge means and the process which will follow;
• whether the patient understands that the child has a caring role at home, and what it is;
• there may be differences in accounts given by the young carer and the patient about the level of caring already being undertaken at home;
• whether the young carer may need an advocate to confidently present their case during the discharge process; and
• what impact the condition of the patient at time of discharge is likely to have on any children in the family and arrange for appropriate referral for support.

Patient is an adult with incapacity

4.2.49. The involvement of carers in situations where the patient is an adult with incapacity^[137] is likely to require sensitive handling by professionals. Professionals may wish to refer to the tool 'Adults who lack capacity - discharge process: key actions ^[138]' for guidance on the matter.

4.2.50. The final decision as to whether or not to involve the carer will be that of the professional, using their professional judgement, having sought the views of the welfare attorney or guardian where possible.

Patient is a child

4.2.51. Standard codes of practice apply when providing consent for information to be shared when the patient is a child (under the age of 18). These are issued by the Information Commissioners Office^[139]. Further information about consent and the General Data Protection Regulation (GDPR) is provided at Annex E.

Recording of information

4.2.52. A multi-disciplinary approach is often required to treat patients in hospital, sharing information between professionals regarding carer involvement will be necessary.

4.2.53. It is recommended that health boards establish a method of recording actions taken by professionals under section 28. This might include information on attempts made to identify the carer as well as a record of how and when the carer was informed of the intention to discharge and any views that may be given regarding the discharge of the cared-for person.

4.2.54. Recording this information may help to avoid any communication duplication and ensure a joined-up approach, allowing information to be easily shared and could be used as a reference point in the future. This might be recorded as part of the patient's notes or separately.

Carer information and consent to share

4.2.55. Under section 11(2)(b) of the Act the responsible local authority must share information contained in an adult carer support plan with any other person the adult carer requests. Section 17(2)(b) applies to responsible authorities in regard to young carers and the young carer statement.

4.2.56. One of the intentions of provisions under section 28 of the Act is that carers are involved and invited to provide views about the discharge of the cared-for person, and so to ensure that appropriate support is provided and that the health and wellbeing of the carer and the cared-for person are considered.

4.2.57. There may be situations where the carer does not want the cared-for person to have access to the information they have shared with practitioners about the hospital discharge.

4.2.58. Health boards should respect the wishes of the carer as far as it is reasonable and practicable to do so as part of the hospital discharge process. Further guidance about consent and the General Data Protection Regulation (GDPR) is provided at Annex E.

4.2.59. In such circumstances, health boards are encouraged to:

• take into consideration the perspectives of both the carer and the cared-for person;
• consider whether the cared-for person has the legal capacity to be involved in the hospital discharge decision making process, and if not consider the implications of the Adults with Incapacity (Scotland) Act 2000for both the carer and the cared-for person;
• recognise that tension can arise when either the cared-for person's or carer's ability to communicate is affected by illness, disability or mental health;
• recognise that tension can arise where either the cared-for person's or carer's first language is not English, and one person interprets for the other;
• provide access to mediation and advocacy services where necessary, which can play and important role in exploring and resolving tensions between the carer and cared-for person; and
• provide access to translation and interpretation services where necessary.

Patient information and consent to share

4.2.60. Professionals will be aware of the various legal requirements around confidentiality and the sharing of patient information in cases where the patient declines to have a carer informed of the intention to discharge. Patient rights, including the right to privacy and confidentiality, are also enshrined in the Patient Rights (Scotland) Act 2011^[140] and information on confidentiality in relation to patient information can be found in the General Medical Council's explanatory guidance 'Confidentiality: Good Practice in Handling Patient Information^[141]'. Each health board will have a Data Protection Officer who will be able to provide advice on data protection and confidentiality in their locality. Some health boards will have their own information and guidance on what patient confidentiality means for carers.

4.2.61. There may be a number of reasons for a patient to withhold consent for the sharing of their personal information with the carer.A patient may also withhold consent for the sharing of patient identifiable information with a carer and may not want the carer to know they have been admitted to hospital.In these situations, it would be expected that each case would be looked at individually and normal codes and standards of practice regarding information sharing would be applied by professionals^[142].

4.2.62. Where consent has been withheld and professionals believe it to be appropriate, it is encouraged that an attempt be made to negotiate with the patient around the sharing of information. This might be achieved by laying out the benefits of doing so for the carer or the patient. Pressure should not be placed on the patient to change their mind if they are not comfortable. It may be that the patient is content for the carer to be informed of the discharge but does not want any further information shared.

4.2.63. If the situation allows, good practice would see professionals supporting and signposting the carer to relevant support.

Signposting and support for the carer

4.2.64. Through the process of involving the carer in the hospital discharge of the patient, it would be good practice for professionals to ascertain whether the carer has an adult carer support plan or young carer statement. If not, with the carer's consent, professionals may wish to notify the relevant authority which must offer one (as at sections 6(1) and (2) and 12(1) and (2) of the Act).

4.2.65. If this is not appropriate, professionals may advise the carer of their right to request an adult carer support plan or young carer statement (as at section 6(4) and 12(4) of the Act).

4.2.66. It may be the case that professionals within the hospital have responsibility for the preparation of an adult carer support plan or young carer statement, in which case the offer should be made to each identified carer.

4.2.67. Professionals are encouraged to make themselves aware of local and national carer support services. Many health boards will already have relationships with local carer centres, general community support services and provide resources on support available to carers.

4.2.68. Professionals are recommended to make carers aware of the local information and advice service for carers under section 34 of the Act. See Chapter 6 on information and advice for carers.

4.2.69. If considered necessary, a professional might make a referral to a social work team or carer support worker in the hospital.