Purpose:

The purpose of this part of SRI 2 is to help the informal carers reflect on and rate the service from their own perspective through a structured process facilitated by the coordinator. This guidance is designed to help services to support the carers through the process.

The discussion with informal carers generates comment and scores that are fed into the SRI 2 website and used later to create and inform the action plan.

Data from the informal carers is preferably acquired through facilitated group meetings but in some situations such as perhaps very remote rural locations the discussion may need to be conducted by phone.

Why Involve Carers?

To be truly recovery focused services need to involve carers in all aspects of their service. The recovery focused service recognises and supports the therapeutic alliance between service providers, service users and informal carers. We know that this holistic ‘connectedness’ where all the key stakeholders are working collaboratively and taking account of each other’s roles and responsibilities delivers best outcomes for all concerned. The ‘web based resources’ at the end of this guidance will be helpful in offering further best practice tips on how best to deliver full carer participation and involvement.

Summary of Key Issues for Informal Carers.

Informal carers highly rate services which demonstrate that they:

  • View mental health carers as an asset having expert knowledge and wanting to be involved.
  • Are ‘carer aware’ and proactively identify, contact and support carers.
  • Seek to ensure that carers needs are met because they recognise that any detriment to the carer will have detrimental consequences for the person cared for.
  • Routinely initiate carers assessments promptly and without being asked.
  • Appreciate that informal carers deliver more hours of care than all mental health services put together.
  • Develop carer peer support.

What do we mean by ‘informal carer’ or ‘carer’?

The terms ‘unpaid carer’ or ‘informal carer’ are often used interchangeably with the term ‘carer’, all of which emphasise the difference between informal carers and paid workers whose roles are prescribed and regulated. Support in Mind Scotland defines informal carers as “relatives, partners or friends who have had to change their lifestyle in order to support or take responsibility for another person who is experiencing mental health problems”. Young carers are those young people who support someone in the family having mental health problems and often provide emotional and practical support and perhaps take on as ‘parenting’ role for younger siblings. Unlike paid workers carers don’t choose to become carers, it just happens and they have to get on with it. Mental health carers often face fluctuating circumstances, which can include highly stressful issues such as suicidality, and on top of that there is the societal stigma of mental health problems to contend with. Another difficulty can be when the person using services does not accept that they have a mental health problem, traditional carers services do not always provide for mental health carers, and accessing resources such as respite is particularly challenging.

Mental health carers do not readily self identify, they may not live with the service user, and traditional carers services are often not configured to suit mental health carers. The carer may be supporting someone who does not actually accept that they have a mental health problem which leads to difficulties such as how to provide respite in such circumstances. Mental health carers often see themselves simply as family members or spouses who are doing their best and fulfilling their obligations therefore it is especially important that service providers routinely and proactively seek to identify informal carers because this is the essential first step towards a carer’s assessment and provision of support.

Confidentiality and Informal carers

The issue of confidentiality has particular significance when dealing with informal carers. In the case where a service user with capacity has stated that they do not wish any involvement from a carer then clearly their preferences must be respected. However there have been occasions where despite the role of the carer being acknowledged and welcomed by the service user, the carer has been excluded by the service providers on the grounds of ‘confidentiality’.

Typically in the process of SRI 2 there will be no conflict or dilemma around confidentiality because the tool is seeking to elicit the informal carer’s subjective opinion about feeling included and involved and whether or not their expert knowledge is valued and utilised as an asset.

Enabling a carer to express their views on a service is not a process that encroaches on ‘client confidentiality’. Confidentiality must not be used as an excuse to exclude carers because even in those instances where a service user has stated that they do not wish to share information with a carer, the carer is still entitled to a carers assessment, and the service’s support in achieving this.

Empowering carers

The issue that most commonly goes unacknowledged between service providers and carers is that of power, specifically the power imbalance inherent in the carer and service provider relationship. The carers may not be used to being consulted and may feel uncomfortable about giving an honest critical appraisal of how they experience the service, for fear of causing problems or difficulties for the person using the service. For the carers to be empowered these concerns need to be intentionally acknowledged and addressed by the service provider and reassurances provided that any critical feedback will be treated respectfully and will not adversely affect either the carer or the service user.

Dealing constructively with challenging feedback from informal carers

We know from experience that when informal carers finally get the opportunity to discuss their feelings about a service it can initially be critical and challenging. This is to be expected from any group who have a lot invested in the outcomes a service delivers for them and the person they care for but little sense of power to influence the service. Indeed carers may not have been asked for their views before and as a result may be feeling ignored and not valued.

One very effective way to manage critical feedback is to ‘roll with resistance’ and hear any criticisms from a posture of openness, empathy, and non-defensive acknowledgement that however apparently unfair or harsh, there must be at least some truth in the feedback. When criticism is listened to and taken seriously it allows the possibility of the informal carers being able to move forward and articulate the ‘good things’ about the service too, but this can only happen after the ‘less good things’ have been acknowledged and addressed.

Facilitation and Other Approaches to Carer Interviews

Creating a safe environment for the honest sharing of experiences is best achieved by taking a facilitative approach. This process can be undertaken by a member of the service staff but consideration should be given to enlisting the help of an advocate, or a worker from a carers organisation, or some other person who will be trusted by the carers and whose presence will be helpful in facilitating the process. There is a range of tried and tested methods of involving carers described in the following table.

Method of involving carers

Things to think about / Hints and tips

Group discussion

  • Preferred option where possible.
  • Think about working with a local carers organisation or group to plan and facilitate the discussion. Local groups can be busy and have limited resources so it is best to contact them in advance and discuss the SRI2 process and what you would like to do with them.
  • Encourage carers to complete the questionnaire individually during the discussion to ensure you get all views, including from those who are less willing or able to speak out.

One–to-one interview and discussion

  • This could be an arranged appointment with a carer such as after they have visited.
  • You could also have a drop in time for carers to come in and meet with you.
  • A local carers organisation could also help to maximise involvement by publicising a drop in or holding it in their premises so that you can go to carers.

Telephone

  • It would be best to contact carers in writing and offer this method. Ideally make an initial contact to arrange a time to speak and when calling confirm they have time to talk.
  • Send the statements/questions to be asked with some guidance.
  • Consider producing a questionnaire or information sheet for carers to read in advance of the telephone discussion.
  • Complete an individual data sheet by agreeing their ratings and noting their comments.

Email

  • Email questionnaire can be used as a way to contact carers some of whom find this a suitable and welcome form of contact.
  • Consider producing a questionnaire for carers to complete and return to you to make it a simple process.

Combination of two or more of the above

  • Ideally you should use a combination of methods to ensure that you are reaching as wide a range of carers as possible.
  • Methods such as telephone, email and drop-in can be an on-going activity and help to improve carer involvement and engagement with carers not just when there is a service development or audit process underway.

Guidance on rating the service

This section of the guidance will help informal carers rate the service against the statements by considering the type of factors that influence the rating.

The degree to which informal carers feel the service achieves the aspirations of indicators will be derived from their experience of the service, and this is supported by evidence such as ‘they did ask me if I knew what a carers assessment was; and then helped me access it’. The scoring will be highly influenced by the informal carer’s own subjective experience of staff attitudes, behaviour, level of friendliness, warmth, empathy and so on.

The rating process is preferably supported via a group discussion. Respondents may need prompts and guidance as to what is meant by basic needs, strengths, community involvement and so on. The facilitator must be prepared to explain what statements such as ‘the staff here seem satisfied in their work’ are trying to elicit. This guidance document is designed to provide support in that process.

Following group discussion and reflection respondents should individually rate each statement on their individual data collection sheet where possible citing supporting evidence.

If it is impossible to arrange a group discussion, informal carers can be given the data collection sheets to complete on their own. This approach is not best possible practice as it precludes healthy group discussion and debate, however if there is no alternative, preparation is vital; the support of an advocate or other neutral party will be particularly helpful in these circumstances. People should not be abandoned with a set of questions that they may have difficulty in understanding or commenting on as this would be a mere paper exercise.

Data collection sheets

The informal carer data collection sheets are printed from the SRI 2 website and used to record ratings and comments. You should print one data collection sheet per person

Scoring and rating

Each statement will be considered and the highest score of 5 awarded where in the opinion of the informal carer the service has met the aspirations of the statement. A score of one is awarded if in the judgement of the informal carer the aspirations of the statement had been poorly met.

Arriving at a fair score between 1 and 5 is a matter of judgement based on reflection, discussion, and the application of reasoning regarding the quality and quantity of evidence.

The N/A (not applicable) option is recorded where the statement is not applicable or relevant.

The carers views may not accord with those of the service and it is the role of the facilitator to invite the carers to say a bit more about their thinking behind their ratings. Obviously it would be inappropriate to argue the matter and confront the informal carer with an opposing view. It is helpful to explore what sort of things about the service (in the carers view) would need to change, to allow them to offer the highest score. Such points for discussion can be recorded (anonymously) by the facilitator and considered at the SRI 2 action plan stage.

Recovery Indicators and Associated Statements

There are ten recovery indicators, five of which are considered in relation to informal carers. Each of these has an associated statement against which the informal carers rate their experience of the service.

Recovery indicator

Associated statement to rate between 1 and 5                                                                                              

Basic needs are identified and addressed.

My needs are considered by this service.

Goals are identified and addressed.

NO DATA REQUIRED

Personalised services are provided.

NO DATA REQUIRED

Service is strengths based.

NO DATA REQUIRED

Service promotes social inclusion.

NO DATA REQUIRED

Service promotes and acts on service user involvement.

NO DATA REQUIRED

Informal carers are involved.

I am fully involved by the service.

Service encourages advance planning and self management.

I’m involved in planning for the future for the person I care for.

Staff are supported and valued.

The staff here seem satisfied in their work.

Practice is recovery focused.

The service helps me feel hope for the future.

Statement to be rated: My needs are considered by this service

The informal carer’s needs include such things as housing, nutrition, health, finance, safety, personal care and spirituality. Unmet needs that disadvantage the carer inevitably have a knock on effect on the person they care for too. The score awarded reflects their views on the degree to which the service has considered these needs.

Carers Assessment

A strong indicator that a service is considering carer needs is the number of carer assessments and carer support plans it has instigated.If a person provides ‘substantial and regular’ care, they have a right to be informed of a Carer’s Needs Assessment by the service, and there is a duty to complete this with the carer. The aim of is to help ensure that the carer is getting all the support and resources that they are entitled to.

Basic Need: Housing

Whilst it is not necessarily the duty of a service to resolve concerns about the housing situation of a carer, it may well be helpful simply to discuss the matter because any housing problems or threat of homelessness can have a negative effect on the service user too. The service can signpost the informal carer to more specialist housing help and advice.

Other Basic Needs including Nutrition, Health, Finance

Food and recovery are closely linked and having a healthy diet helps promote good mental health. A situation where the informal carer is under stress and not looking after themselves well, will eventually compromise their ability to look after the person they care for, potentially leading to poorer outcomes for all concerned. Informal carers are frequently under financial pressure and some have had to give up work therefore services should be at least able to signpost them to sources of help.

Basic Need: Spirituality

Spirituality can be described as those feelings and beliefs that relate to an individual’s sense of the meaning and purpose of their life. Meeting spiritual needs is a fundamental part of person centred care and is everyone’s responsibility. Hope is itself part of spirituality and some may get hope from religious beliefs whilst others find hope in the absence of religion. In any case informal carers should be encouraged to discuss their spirituality and how to sustain it even in the face of disappointments and challenges. Services can help informal carers to articulate their sense of what it means to be an informal carer and what effect this has on their sense of personal identity.

Statement to be rated: I am fully involved by this service

Informal carers want to be recognised, listened to and supported, and the scores given here will reflect the degree to which the service has succeeded or not involving informal carers and supporting them to contribute. For example carers routinely being invited to reviews, case conferences or planning meetings and being aware that their perspective was welcomed by the service is rated highly as is generally feeling informed and included by the professionals. To score highly on this statement services will have non-defensive, open channels of communication available to the carers. This will include mechanisms whereby staff are intentionally and willingly accountable to the carers and service users.

Other factors which would be considered in rating this statement include:

  • Carers feeling like equal partners in the planning and delivery of support.
  • Families and informal carers having a sense of control over the care and support plans.
  • The service ensures that a carer assessment is initiated.
  • Tools such as ‘Talking Points’ are used to elicit carer views.
  • The carer’s expert knowledge is utilised in prevention as opposed to only during a crisis.
  • A ‘charter of commitment’ to carer’s rights is prominently on display.

Statement to be rated: I’m involved in planning for the future of the person I care for

Informal carers who give this a high score will be able to describe how the service demonstrates that it involves and includes the informal carer in the planning for the person using the service.

Factors the informal carer will consider in rating this statement will include information given about:

  • Diagnosis, assessment and care plan.
  • Named nurse, keyworker or care manager.
  • Options, choices and possibilities.
  • Resources designed to support the carer.
  • Dates for case reviews, case conferences and a clear invitation to participate.

The informal carer who feels involved will have a clear understanding of the boundaries of confidentiality and be aware that his or her expert knowledge about the person they care for is valued and taken seriously. Clear communication from the service is a very important aspect of carer satisfaction. Good communication includes written guidance for the carer, for example service leaflets, complaints procedure, a clear description of what the service provides and protocols for discharge planning and aftercare support. Carers can also be invited to provide some context and information about the person using the service that demonstrates their identity beyond that of service user, their likes, dislikes, achievements and abilities and so on.

Statement to be rated: The staff here seem satisfied in their work

This statement is simply inviting the informal carer to rate staff satisfaction. Informal carers wishing to give the highest score will be able to describe what aspects of the staff behaviour and attitudes lead them to that score. It may be that they experience the staff as willing to communicate with them, happy to involve them, highly motivated, optimistic, professional, willing to go the extra mile, and generally exuding an air of job satisfaction. Rating this statement highly does not require the staff to be cheerful and at peak performance all day and every day, it is more to do with them being generally satisfied. This recovery statement acknowledges the parallel process whereby satisfied staff tend to create satisfied service users, with that having a beneficial effect on the informal carers too. Staff who feel supported and valued themselves are more likely to value and support the informal carers and keep them informed and involved.

Statement 9: The service helps me feel hope for the future

A high rating for this statement would indicate that the informal carers found the staff to be recovery focused in their practice. Rating the service against this statement is based on the personal experience of the service from the carer’s perspective. Responding to this statement can involve describing specific behaviours and attitudes that tend to instil hope, but equally just having the feeling that staff are supportive positive and approachable, without being able to articulate why, is still valid. Informal carers regard staff attitudes and behaviours as one of the most important influences on how they feel about the service. Being informed and involved in a courteous respectful manner by supportive and approachable staff tends to give informal carers confidence that the person they care for is being treated in the same way. A service whose actions demonstrate its ambition to put the needs and wishes of informal carers and the person they care for at the heart of everything it will be highly rated.

WEB-BASED RESOURCES.

Psychiatrist checklist for informal carers

Informal carers checklist of questions for psychiatrist

Top tips for mental health workers (NES / Support in Mind)

The Triangle of Care by the National Mental Health Unit

Talking Points- Personal Outcomes Approach

Partners in care-Royal College of Psychiatrists and the Princess Royal Trust for Carers

Caring Together; The carers strategy for Scotland 2010-2015  

Scottish Recovery Network: Carers and Supporting Recovery Report

Machin K; Repper J (2013) Recovery: A Carers Perspective. Centre for Mental Health.

(In print, link will be provided following publication).