Why is important to involve carers and families in the design and delivery of the persons support services?

We work to develop our services so that you feel supported and have been given useful information by Neami staff when needed. This way you are best able to undertake your roles – one of which is to be there as a carer.

Understanding your role in a person’s life

We define carers and families as people who have an interest in a person’s wellbeing, who are affected by their illness or provide support to them at times of need. Carers do not need to be a blood relative and can include parents, children, siblings, spouses, friends, neighbours and others in a person’s life.

We believe that:

• Recovery is supported within an environment including carers and families. You can provide us with useful information to support a persons’ recovery work.
• Having a strong network of support aids recovery, so working with you and the person together may lead to the best possible outcomes.

• You have a right to be included in the work that occurs between a staff member and the person as it may have an impact on your life as well. For more information on how we can include you in our work, please read the section 'Working together with you'.

• You may also experience changes in your life when a family member/person you care about becomes unwell and may also need support.

Other than the person themselves, you often spend the most time with the person and therefore may like to contribute ideas on what may be useful moving forward.

Family and other carers should be involved as a matter of course as partners in the provision of treatment and care unless good reason is given, and trust boards should ensure that reasonable adjustments are made to enable and support carers to do this effectively. This will include the provision of information, but may also involve practical support and service co-ordination.

Recommendation 3 (p. 11).4 Reproduced with permission from Michael J. Healthcare for All: Report of the Independent Inquiry into Access to Healthcare for People with Learning Disabilities. London: Aldridge Press; 2008

This study found that there are many positive examples of carer involvement, but this remains patchy and unpredictable. The most important factor contributing to the effectiveness of carer involvement was the degree to which staff understood the importance of carer expertise (rather than simply carer work) and welcomed it, and the degree to which the roles of both staff and carers were clarified on an individual basis. With regards to the latter, there were particular tensions and misunderstandings between hospital staff and paid carers.

A lack of staff understanding and acceptance of the role of carers as experts (i.e. staff not listening to carers) was a strong contributing factor in compromising patient safety.

Practical support for carers was essential in order to achieve effective carer involvement, as was a positive and welcoming staff culture. The ward manager had a pivotal role in this.

The lack of integration between health and social care funding was a barrier to active carer involvement; in particular, paid carers in the community are not funded to provide continued (and often necessary) support when the patient is in hospital.

The barriers and enablers that have emerged in this study in relation to involving carers as partners in care are summarised in an empirical subframework (Figure 8).

During stage I, two trusts had formal policies in place to support carers, and three trusts were in the process of developing such policies. These policies concerned carers of any hospital patient, not just carers of patients with learning disabilities. The policies included the provision of the necessary support and information for carers. One trust’s carer policy was detailed and extensive, directing staff to identify carers and involve (rather than just inform) them at all stages of the patient’s journey and to listen to carer expertise. One hospital trust had developed guidelines for the admission of patients with learning disabilities which included involving the carers.

During the course of the study, there was further development of carer policies, prompted in part by a national focus on the needs of patients with dementia. Several trusts had more detailed policies and support for carers in place during stage III. This included the provision of a special ‘carer badge’, designed to ensure that carers would not be questioned about staying with the patient outside visiting hours. Such badges came with an entitlement to parking permits and staff discounts in the hospital canteen. Evaluation of such schemes had not yet happened; for example, it was not yet clear how staff decided who could be issued with such badges.

Interviews with senior managers showed that there was a good understanding of carer involvement among Directors of Nursing and Medical Directors and strong support for welcoming carers as partners in care. Ward nurses were not always aware of the existence of policies but mostly understood the requirement to provide extra facilities for carers.

It must be borne in mind that the sampling strategy is a source of selection bias. As the principal method for questionnaire distribution was through the LDLN (particularly in the three hospitals with an on-site LDLN), it is probable that respondents were more likely to be carers who had received input from the LDLN. It is likely that this had a positive impact on their hospital experience (see Chapter 9).

Furthermore, there is the strong possibility of response bias, as those carers who hold particularly strong views on the care received (whether positive or negative) may be more likely to respond.

These limitations in the sampling strategy mean that the extent to which positive and negative carer experiences are representative of all carers cannot be determined. However, it does not negate the analysis of contributing factors to (in)effective carer involvement.

The full results of the carer questionnaire, including all free text comments, are listed in Appendix 5. Figure 9 gives an overview of the answers to questions 4–20, related to the hospital experience, ranked in order of the level of respondent agreement (highest first). It shows that a high proportion of carer respondents (85%, 75 out of 88) stated that staff were welcoming and supportive of them as the person’s carer.

Carer respondents were asked ‘Overall, how satisfied are you with the standard of medical care provided to the patient by this hospital?’ and could give a rating between 1 and 10, where 1 was ‘not at all satisfied’ and 10 was ‘extremely satisfied’. The mean score was 7.3 (n = 84). Asked how satisfied they were with the ‘experience’ for the patient, the mean score was 7.0 (n = 83).

Carers were invited to provide ‘any other relevant comments’ in a free text box; 59 respondents did so. These comments were a mixture of positive and negative (summarised in Table 7), with some respondents describing both positive and negative experiences. Such ‘mixed’ comments were a result of opposing experiences on different wards, or differences in attitudes among staff, or one negative aspect of an overall good hospital experience.

The issues raised in the questionnaire were further explored in the carer interviews. This confirmed that positive practice was present at each study site, but was not uniform within hospital sites or even within wards. For example, the following comments were made by two respondents from the same hospital:

I would like to thank hospital staff and especially [LDLN] for offering all support and recognition to carers from [residential care setting]. We had unlimited amount of time for stay with the patient, access to hospital staff and free parking permission during all period. Staff was friendly, professional and attentive, gave explanation when was asked and took their time with the patient to ensure she understands what they were doing.

P49, paid carer

Nurses/doctors need to listen to carers when they express concerns. We were not taken seriously on a number of occasions, leading to serious consequences for the person we support.

P97, paid carer

The staff survey (Appendix 4) contained a number of statements about involving carers; respondents were asked to rate their level of agreement with these statements. The responses to carer-related questions are summarised in Figure 10, ordered by level of agreement (highest first). This shows an overwhelming level of support among staff for carer involvement. One respondent commented in the free text box:

You can’t care for those patients or any patient without involvement of family and carers.

P94, Director of Nursing

The interviews with clinical staff confirmed and expanded on the results of the staff questionnaire. Most nurses stated that they welcomed carers and that carers were offered practical support, in particular food and drink, unlimited visiting hours and facilities to stay with the patient. However, carer involvement was not always without problems or tensions. The positive and negative experiences of carer involvement from the perspectives of hospital staff are summarised in Table 8.

The positive picture emerging from the staff questionnaires and, to a lesser extent, the carer questionnaires is not entirely straightforward. There were persistent reports across all study sites of compromised patient care stemming from inadequate carer involvement, leading to compromised patient safety in a number of cases. Analysis of these reports showed that a major contributory factor was a lack of agreement on carer roles and diverse understanding of the concept of carer involvement. Conversely, where the carer role was well understood and supported, with carers’ concerns listened to and acted upon, reported outcomes were good and carer satisfaction was high.

In order to understand the barriers to effective carer involvement more fully, the following sections look in detail at the various aspects of the carer role, at staff perception of this role, and at the differences between family carers and paid carers.

Carers and staff described a range of tasks and roles that can be summarised as follows:

1. reassuring the patient

2. preventing ward disturbance

3. giving basic (nursing) care

4. providing communication support

5. contributing expert knowledge

6. participating in decision making

7. keeping the patient safe.

The presence of a familiar carer often helped patients to cope with the hospital environment.

Interviewer: Was it good having [Mum and Dad] there?

P115, patient with learning disabilities: Yeah. Because I felt safe with them around you see.

Staff and carers mentioned that some patients with learning disabilities coped better if they had someone with them who could keep them ‘occupied’. Without carer support, managing unconventional or challenging behaviour that could be disturbing to the ward and other patients could be difficult for staff.

It’s better to have the carer in, than have a complex patient with learning disabilities where we’re faced with really challenging behaviour because everything is strange and we’re all strangers.

P38, Director of Nursing

Many carers supported the nurses’ tasks by assisting the patient with washing, dressing, feeding and toileting. These tasks could be time-consuming. Some patients with multiple disabilities needed one-to-one (or even two-to-one) support with basic nursing care when they were at home. In some cases, carers also offered to assist with the administration of medication.

Carers of patients who had communication difficulties acted as a ‘bridge’ between the patient and the hospital staff. They could interpret the patient’s communication and help hospital staff understand it, and they could ‘translate’ hospital staff’s communication and information about what was happening in a way the patient could understand and cope with. Doctors and nurses found communication support from carers invaluable in their assessment of the patient’s needs.

[The patient] was quite good at communicating but she was very repetitive in what she kept asking me . . . I really, really would have found it very difficult without the carer who was with her.

P84, Medical Director

Carers had in-depth knowledge of the patient and his or her needs, and could therefore advise and support staff in their attempt to understand the patient’s needs. This was important in providing timely treatment and care. Carers’ expert knowledge also meant that they could advise staff on providing appropriately adjusted care.

I looked after one gentleman and he would only have mustard with all his food, his drinks, his tablets, he would only have mustard and without mustard there’s no hope in getting anything in him. I only found that out by talking to somebody that knew him.

P33, staff nurse

Participating in decision-making around care and treatment, including discharge planning, goes beyond simply being informed by hospital staff of the care and treatment given.

I have found it invaluable to work closely with the patients’ family/carers and involve them with the plan of treatment. This encourages good communication and helps the family/carers feel their loved one is well cared for and in the right environment whilst they are being treated.

P803, senior staff nurse

The role of the carer as someone who ensures that the patient is kept safe was described by a number of carers who felt that without their constant presence, the patient would be left anxious, poorly supported, lacking in basic nursing care and even at risk of harm.

I felt I couldn’t leave him. I stayed with him from 8 am to 7 pm every day, because the nurses were so clueless.

P17, family carer

In analysing the tensions between carers and staff with regards to carer involvement, considering whether carers are seen as ‘visitors’, ‘workers’ or ‘experts’ as described by Allen63 (see Chapter 4, The roles and experiences of carers in hospitals) provides a useful framework. There is a certain degree of overlap between these three roles.

Despite carer policies that indicate the need for recognition of carers and provision of support for their role, there were examples where staff treated carers no differently from ordinary visitors. This was evident in reports of hands-on, involved carers who were asked to leave at the end of visiting hours. Such carers felt unwelcomed in their role as carer and unsure about the extent to which they could be involved with the patient’s care. There seemed to be a culture among some staff, and on some wards, of a strict adherence to hospital rules with little flexibility and support for the carer role and little understanding that carer involvement was a necessary ‘reasonable adjustment’ for many patients with learning disabilities. Several carers described a difference in attitude among different members of the same staff team, with some nurses treating them as part of the team and other nurses imposing the same restrictions as on visitors.

Roles (a) to (c) and part of role (d) as described in Carer roles can be described as ‘worker’ roles, subordinate to the nurses. Carers performing worker roles relieved the staff (mostly nurses) of often time-consuming tasks that fell within the hospital staff’s remit. Both staff and carers recognised that carers were often better placed than hospital staff to fulfil these tasks effectively, as the carer knew the patient well and was trusted by the patient. The ‘worker’ roles helped the patient fit in with the routines of the clinical area and enabled staff to carry out their work in the usual way. Carers fulfilling roles (a) to (d) were greatly welcomed and appreciated by the hospital staff.

Roles (e) to (g) and part of role (d) as described in Carer roles can be seen as ‘expert’ roles, different from and complementing the work of the hospital staff and thus making the carer an expert partner in care. Unlike most of the ‘worker’ roles, these ‘expert’ roles cannot be performed by hospital staff. In their role as experts, carers could help staff understand the reasonable adjustments needed for an individual patient. They often directed staff to a deviation from usual practice and routines in order to make hospital care acceptable and accessible to the patient. It is the ‘expert’ aspects of the carer roles that are particularly relevant in ensuring patient safety.

The findings of this study suggest that ‘involvement in provision of treatment and care’ may be interpreted in a variety of ways by hospital staff. Many respected and appreciated carers as ‘workers’ but this did not necessarily extend to the inclusion of carers as ‘expert and involved partners’.

The staff and carer perspectives illuminate discrepancies in the way the concept of ‘carer involvement’ was understood. Staff mostly spoke about the importance of carers’ help in reducing the patient’s anxiety, ‘calming the patient down’, and providing help with basic nursing care – in other words, they spoke about carers as ‘workers’. Many carers, on the other hand, talked about the importance of sharing their expert knowledge of the patient with staff – they spoke about carers as ‘experts’. There were particular concerns if such expertise was not acted on by staff. Although some staff recognised, welcomed and sought carer expertise, carers acting as experts could also be seen as challenging by staff. Carers who reported that they felt they were not listened to usually referred to the fact that their expertise was dismissed and not acted upon – even if their role of workers was welcomed.

Difficulties arose in a variety of ways, and occurred mostly when staff and carers had different perceptions of the nature of the carer’s role, for example when:

• carers viewed themselves as ‘experts’ and wished to contribute their expert knowledge, whereas staff viewed them as ‘workers’

• carers wished to be seen as ‘workers’ whereas staff viewed them as ‘visitors’

• staff thought the carers were experts, whereas the carers’ expectations were to be ‘workers’ (for example, short-term paid carers who had little expert knowledge of the patient)

• staff thought the carers (usually paid carers) were ‘workers’ in the sense of being able to assist with basic nursing care, whereas the carers felt they could only assist with communication and providing reassurance.

Examples of some of these difficulties surrounding the carer’s role, as well as the factors that facilitate effective carer involvement, are given in Table 9.

There were also some unique tensions around paid carers, who were not necessarily seen and supported as ‘carers’ in the same way as family carers. One hospital’s carer policy explicitly stated in its definition of a carer that ‘the carer we refer to is not employed to provide this help’. However, in many ways, the position and role of paid carers was similar to that of family carers. Tensions were related to limitations in paid carers’ job descriptions and (for some) limitations in their knowledge of the patient, and nurses’ perceptions of paid carer roles.

Hospital staff often made erroneous assumptions about the paid carer role. Not all nurses and HCAs were aware of the fact that some paid carers provided social care rather than support with basic physical care tasks. If carers provided intensive support at home, assisting the person with learning disabilities with all tasks of daily living such as feeding, washing and toileting – sometimes including skilled tasks such as the administration of percutaneous endoscopic gastrostomy (PEG) tube feeding – they often continued to perform these basic nursing care tasks when the patient was in hospital. In other cases, carers might simply be there because the patient could not navigate the hospital pathway alone; they would not expect to be involved in basic nursing care tasks.

This could lead to compromised safety if ward nurses assumed that paid carers were health workers like themselves, and left caring tasks to paid carers who could be ill-equipped (or even forbidden by their managers) to perform them. The following quotes, taken from different study sites, exemplify these tensions.

[The hospital staff] expected us to do things that we shouldn’t really be doing. They asked us to help with toileting, but we are not here to do that. We never help our clients with toileting . . . [The nurses] asked our support workers to go in for some quite intimate procedures, like helping with a groin wound: ‘Could you just come in and hold this or push this?’ Now that could be really awkward . . . It blurs the boundaries of your relationship with the client. You have to think about going back with the client into their house, and it would feel really awkward if you have done something so intimate with them . . . Personal care is just not our job. Our job is to get clients to appointments, things like that. So we give our staff quite clear boundaries about what they shouldn’t be doing. But our staff are made to feel uncomfortable on the ward if they are asked to assist and they say no.

P161, paid carer

If they’re a live-in carer or full-time carer of that patient then they should be fully involved in caring . . . here in hospital as well . . . I don’t think it’s any use to me or the patient for them just to be sat there . . . Why would you just need somebody to sit there in a chair, you know, not being involved in feeding?

P42, senior staff nurse

Ward staff further noted with frustration that the nature of paid carer support could vary even for the same patient, with some carers providing significant help with basic nursing care whereas others ‘just sit there’.

Not all paid carers knew the patient well. Some were new or short-term agency staff who could not provide even the most basic information about the patient (including the patient’s name), which was difficult and frustrating for hospital staff.

The issues of accountability and supervision of paid carers in hospital were not clarified. Ultimate responsibility for the care of a patient who is on acute trust premises lies with that trust. This is of relevance where ward staff leave basic nursing care to carers, or where paid carers perform their usual care tasks when their client is in hospital.

The following were major factors contributing to effective care involvement:

1. protocols for shared care (including clarification of roles)

2. practical support for carers (including breaks from caring)

3. a staff culture where carers are welcomed as a matter of course

4. funding for high care needs.

Many of the tensions between carers and staff arose simply because there was no clarity about mutual roles, in particular:

• whether carers were experts or non-experts (or not carers at all, but simply a visitor)

• to what degree carers would contribute to the ‘worker’ aspect of caring.

Carer involvement was most effective where there was good communication between the carer and the ward staff, and where ward staff were clear and explicit about responsibilities and roles, accommodated the contributions from carers and actively sought their expertise. Several trusts had become aware of the need to develop protocols for shared care, whereby the role of family carers (not limited to carers of people with learning disabilities) is made explicit and their contribution discussed. However, this was being trialled after the data collection period for this study.

We now have as part of our carers policy, a kind of negotiation that we have with the carers that says, ‘Okay, Joe’s in here, you normally do all of these things, while he’s in hospital what of those do you want to carry on doing, what of those do you want us to take up?’ I think we have a real responsibility around that and then we need to make sure we’ve documented that and we reflect on how that changes.

P65, Director of Nursing

In order to fulfil the role of ‘worker’, carers needed carer-related reasonable adjustments: facilities for carers that included food and drink, a bed and a parking space. The carers’ role became extremely difficult to fulfil if these were not given, either because they were not offered or because they were not available.

Most staff in this study understood this need. In some situations, carers reported that they were left by ward staff to carry out basic nursing care tasks, but were not afforded the same facilities as the nursing staff. This was particularly pertinent when carers were not given any relief from caring and were expected to stay with the patient for many hours without a break.

After the data collection period ended, two trusts initiated carer support programmes, whereby carers were given a ‘passport’ or ‘badge’ to indicate their status as carer.

The existence of carer policies, and senior hospital management support for these policies, did not necessarily translate into a culture of support for carers throughout the trust. There was a sense among both carers and staff that the ward manager had a pivotal role and a strong influence on ward culture. Ward managers could be role models in welcoming carers and demonstrating flexibility in the provision of reasonable adjustments.

Some nurses and parents highlighted the positive culture on children’s wards, where there is a much more ready recognition and acceptance of the role of the carer. Similar acceptance and support for carers was reported by carers in relation to intensive care wards. Conversely, example G in Table 9 exemplifies a ward culture where carer involvement is not welcomed. This team of paid carers not only offered support with basic nursing care, but also provided crucial knowledge about how such care provision could best be managed for this particular patient; both were received with hostility by the doctors and nurses.

Many people with learning disabilities who are in hospital need a higher level of support than the average patient on the ward. This is particularly obvious for patients who receive social care support in the community setting. Difficulties arose from the lack of integration between health and social care provision.

There were local variations in the way in which these patients’ support needs were funded (if at all) when they were in hospital, and the rules about this were unclear. Hospitals tried to allocate extra staff to the ward when needed and when possible. Some hospitals paid for a member of the patient’s usual community care staff team to be with the patient while in hospital. There were also examples where the patient’s usual paid carers felt they were expected to provide continued support when their client was in hospital, but the social care payments did not always allow for this. Issues of responsibility and accountability were not always clear when hospitals paid for members of community care staff teams to provide part of the care while the patient was in hospital.

Figure 11 represents a model for clarifying roles and carer involvement, developed as a result of this study’s analysis of tensions between carers and hospital staff.

• Expertise: The involvement of carers who are ‘experts’ needs to be sought even if they are not physically present on the ward. This includes keeping carers informed, seeking their expert knowledge of the patient, taking their expert advice into account, and involving them in planning treatment and care.

• Involvement in care and support tasks: The level of carer involvement in basic nursing care tasks, communication support and reassurance, through the carers’ presence with the patient in hospital, needs to be clarified and reviewed regularly.

Below is a non-exhaustive list of examples of the different levels of involvement, all taken from examples within the study. Carers who fall within categories A and B should be included as expert care partners. If a carer falls within categories B or D, a protocol for shared care would be beneficial.

A. High expertise/low involvement in care tasks

• Family carers who cannot be present with the patient in hospital.

• Family carers who are with the patient in hospital but need breaks from active caring.

• Paid carers who are highly involved in supporting the patient in the community but are unable to provide active care support in hospital.

B. High expertise/high involvement in care tasks

• Family carers who provide intensive support to the patient at home and continue to do so in hospital.

• Family carers of patients who have a degree of independence at home but need increased carer support in order to cope in hospital.

• Paid carers who know the patient well, provide care in the community and provide the patient with care and support in hospital.

C. Low expertise/low involvement in care tasks (non-carers)

• The researchers from this study.

D. Low expertise/high involvement in care tasks

• Paid carers who do not know the patient well but who accompany the patient in hospital, providing a range of support tasks including communication support.

• Extra care assistants provided by the hospital.