Service coordination: barriers and facilitators to accessing rehabilitation services following discharge to the community

The outcomes that matter most

This was a qualitative review so the committee were unable to specify in advance the data that would be located. Instead they identified the following example main themes to guide the review and were aware that additional themes may have been identified:

• Isolation
• Cognitive impairment
• Geograhical area
• Discharge planning

The quality of the evidence

When assessed using GRADE-CERQual methodology the evidence underlying the statements was found to range from very low to high quality. The recommendations were drafted mostly based on the themes but in some parts supplemented accordingly with the committee’s own expertise.

For adults, the evidence ranged from high to very low quality, with the majority being high and moderate quality. Downgrading was due to poor applicability in cases where the themes were not based on any research from a UK context, and/or had only been identified amongst a population affected by only one particular type of traumatic injury. Some downgrading for adequacy occurred when the richness or quantity of the data was low. Other issues resulting in downgrading were in the event of methodological problems that may have had an impact on the findings (for example, lack of discussion surrounding researcher’s relationships with study participants and lack of information regarding data collection techniques), and for incoherence within the findings (for example, when themes were a combination of a few different but broadly related experiences and themes).

For children and young people, the evidence ranged from high to low quality, with the majority being low quality. The evidence was downgraded due to poor applicability in cases where the themes were not based on any research from a UK context, and/or had only been identified amongst a population affected by only one particular type of traumatic injury. Some downgrading for adequacy occurred when the richness or quantity of the data was low. Other issues resulting in downgrading were in the event of methodological problems that may have had an impact on the findings (for example, unclear recruitment methods, and lack of discussion surrounding the relationship between researchers and participants), and for incoherence within the findings.

Benefits and harms

Moderate quality evidence from the theme ‘Inner motivation versus acceptance’ in the adult evidence review showed that people with complex rehabilitation needs report different levels of inner motivation to pursue further rehabilitation. This is influenced by factors including personality, previous lifestyle and abilities, and future goals and aspirations. The evidence was supported by low quality evidence from the theme ‘Goal setting’ (also in the adult review) which reported that goal setting helped people to engage in rehabilitation, increasing long-term success. The committee discussed that goal setting should be introduced early in the rehabilitation journey, ideally as part of the rehabilitation needs assessment. Healthcare professionals should ensure that they explore an individual’s lifestyle and future aspirations as part of the rehabilitation needs assessment. This will allow rehabilitation plans to be tailored to a patient’s prioritised outcomes, encouraging engagement with long-term rehabilitation.

Moderate quality evidence from the theme ‘Inner understanding’ in the adult review found that people need time to process their own emotions surrounding their traumatic injury (for example, forming a new self-understanding about their post-accident condition). Rehabilitation may either be limited or fail to progress until the person understands the potential consequences of their treatment options and are comfortable in their choices. The committee discussed the fact that the time scale needed for adjustment should be led by people themselves, because each person will have different support needs and will adjust at their own pace. Additionally, the committee highlighted that people with brain injuries or cognitive impairment following traumatic injury may have difficulties processing information. In these cases, healthcare professionals should ensure that information is provided in an enhanced manner to optimise the person’s understanding. Practical aids could be used for this, such as providing written plans in suitable formats for the individual (for example, Easy Read or pictures), diary prompts for appointments or medication, or increasing the amount of time patients have to assimilate information before expecting decisions. The committee highlighted that healthcare professionals should be aware of the possible legal entitlement for people who lack mental capacity or who have care and support needs to professional advocacy. Further information can be found in the Mental Capacity Act 2005, the Care Act 2014 and the NICE guideline on decision making and mental capacity. Similarly, the committee discussed how support could be emotional, by healthcare professionals showing interest in the person rather than the patient. By asking about personal interests, usual activities, and their opinions about their injuries, rehabilitation planning can be focused towards an individual and the goals most important to them going forward. The committee also agreed that encouraging people to record information in their own words can increase a person’s understanding about their injuries and treatment options, and thereby increase their ability to participate in discussions and decision making with rehabilitation professionals.

High quality evidence from the theme ‘Transition coordination and continuity’ in the adult evidence showed that people were more likely to access to rehabilitation services if the service was devised and delivered as a continuation of the treatment they had already received. A seamless transition from 1 service to another, ideally with some continuity of healthcare staff, location or treatment centre, helped to facilitate ongoing access. If this was not possible, people appreciated when their information and rehabilitation plans were handed-over and communicated well between different services. This theme was supported by 2 themes in the children and young people’s population. Moderate quality evidence from the theme ‘Continuity’ showed that a barrier to children and young people accessing continued rehabilitation was poor communication, referral or transfer of care between services. Low quality evidence from the theme ‘Child’s feelings towards their rehabilitation team’ reported that parents felt their child was more engaged with continued rehabilitation when they experienced continuity of healthcare staff. This was because they were able to build a rapport with professionals, which was lost when they were introduced to a new rehabilitation team. The committee discussed extensively how continuity between rehabilitation settings could be increased within healthcare systems. From their experience, a rehabilitation plan (for example, a rehabilitation prescription) was the most appropriate way to do this. The committee used their knowledge and experience, as well as additional themes from the evidence review on coordination when transferring from inpatient to outpatient settings, to compile a comprehensive list of what this document should include. By having all patient history and rehabilitation plans in 1 place, information can be located quickly and efficiently when needed. Additionally, consistency of information is increased if there is only 1 source of information. This committee hightlighted that this should also include information on pain management, particularly a withdrawal from analgesia plan. They agreed that people are often discharged while prescribed large amounts of analgesia (for example, opiates) but without a clear plan for gradually decreasing their pain medication as appropriate. The committee discussed that this rehabilitation document should be shared with incoming rehabilitation services and a person’s GP, as well as the service users themselves. Not only does this mean that people remain properly informed of their previous, continuing and future rehabilitation needs, it is an additional means of sharing important information between rehabilitation services. Further information on longer term analgesia management can be found in the NICE guideline on medicines optimisation. While there was a small concern that this single source document might lead to propagation of misinformation throughout, the committee agreed that this had not been an issue in their experience. Sharing the rehabilitation document with service users before discharge will also help identify any inconsistencies that may be present, which will limit the risk of errors. The committee agreed that it is not always possible or appropriate for people to have access to all of the information a rehabilitation plan contains (for example, if it contains because extensive medical information and/or language). In these situations, important information for continuing rehabilitation progress should be summarised in a separate document. At a minimum, these should include a person’s progress against rehabilitation goals, follow-up appointment times and details of who to contact regarding them or questions about rehabilitation.

Low quality evidence from the theme of ‘Flexibility’ from the adult evidence review showed that access to rehabilitation is promoted when access times are flexible. This can be due to competing interests (for example, work or criminal justice appointments). This theme supported evidence from the expert witness, who has seen benefits of including a virtual 1-week education programme delivered prior to residential rehabilitation, in order to prepare people for an intensive rehabilitation programme while decreasing the amount of time people would need to spend away from home. The committee discussed that, by creating a self-management programme, healthcare professionals can assist individuals with scheduling rehabilitation exercises and tasks to be completed in a time that suits them best. This can increase engagement in rehabilitation and decrease the scheduling stress that many people undergoing rehabilitation face. However, due to the low quality of the qualitative evidence, the lack of corresponding quantitative evidence to support this recommendation, and the potential resource implications of developing self-manangement programmes (for example, increased time needed from healthcare professionals), the committee recommended that this format be consider but not mandatory. Additionally, the committee highlighted that these guided selfmanagement programmes should not replace face-to-face appointments, and recommended regular reviews with rehabilitation healthcare professionals and practitioners to ensure that progress is still as expected. These appointments also will allow time for people to discuss any challenges or issues they may be experiencing with their self-management programme.

High quality evidence from the theme ‘External encouragement’ from adult population showed that positive interactions with family members, friends and healthcare professionals can motivate adults to engage with continued rehabilitation, beyond initial treatment. A concern for these individuals was not being able to join in with normal activities that they enjoy with their peers. The committee discussed the importance of mitigating the sense of isolation people can feel while undergoing rehabilitation, when they might not be able to participate at all in their hobbies or not in the way they are used to participating. Therefore, they recommended that family members, carers and friends should be involved in the rehabilitation journey in order to increase their understanding and ability to encourage rehabilitation progress. However, they noted that this might not always be appropriate (for example, depending on relationship dynamics) and to be aware of the patient’s feelings on this matter when inviting others into rehabilitation planning.

High quality evidence from the theme ‘Finances and insurance’ in the adult evidence review showed that access to adequate insurance or the ability to pay, was a source of concern when accessing rehabilitation services in some non-UK contexts. Even within the UK, evidence showed that certain rehabilitative activities required some sort of payment in return for access. The committee discussed that many patients and their families were unaware of the independent advice services that are available to them to help them navigate the financial side of rehabilitation within the healthcare system. This was supported by low quality evidence from the themes ‘Finances’ and ‘Employment’ from the children and young people population. The committee discussed that many patients and their families were unaware of the independent advice services that are available to them to help them navigate the financial side of rehabilitation healthcare system. Beside the monetary aspect, the committee considered the evidence surrounding complex traumatic injury and the justice system. Low quality evidence from the theme ‘Justice system involvement’ in the adult evidence review showed that the ability to attend rehabilitation appointments may be disrupted by conflicting appointments (for example, some patients may need to attend court proceedings in relation to their accident). The committee thought that other recommendations made throughout the guideline address the element of flexibility of appointments. However, they recognised that people need information on what advice services are available to them and how to navigate these parallel systems. They therefore expanded the list to include advice on the legal and employment sectors.

High quality evidence from the theme ‘Injury related barriers’ from the adult evidence showed that there are many potential barriers for adults accessing rehabilitation services in the community, which can be either external or internal (for example, difficulties concentrating for long appointment times if the person had a head injury or physical access to buildings if their mobility has been affected). This was supported by low quality evidence from the theme ‘Tailored care for comorbidities’ (also in the adult evidence review), which describes that access to services can be adversely impacted when services focus on 1 disability without providing adequate options for people with co-morbidities. Additional support came from low quality evidence in the children and young people’s themes of ‘Visibility of impairment’ and ‘Family factors’. In the former, parents described how access to rehabilitation services could be harder if their child did not have a visible disability, or that they were more likely to receive treatment for physical injuries rather than psychological injuries. The latter theme described that family structures can be a possible barrier, if there is a lack of support from other trusted adults who can take children to rehabilitation appointments or look after other children in the family while parents attend these rehabilitation appointments. The committee discussed that these identified barriers can be overcome with adequate planning prior to discharge (for example, certain rehabilitation appointments can be given via videoconference at home if there are difficulties with travel). This requires healthcare professionals to consider all of a patient’s injuries and how they may impact on access to community services, which might be significantly different from inpatient settings.

High quality evidence from the theme ‘Point of contact’ in adults, as well as moderate quality evidence from the theme ‘A point of contact’ in children and young people showed that people felt more comfortable with accessing rehabilitation services if they had a single point of contact. If this was not provided, people were unsure who to contact for help first, discouraging them contacting the service at all. This finding was supported by several themes in other co-ordination reviews. The committee discussed that a central point of contact was very helpful in developing relationships with patients and their families, leading to a better rapport and increased trust in rehabilitation services. However, they discussed the practical limitations of applying this within the inpatient setting. Concerns were raised about patients assuming that they could contact a named healthcare professional at any time, regardless of shifts and annual leave. However, the committee highlighted that a central point of contact will be particularly important when patients transfer from inpatient to outpatient settings, when care is being handed over to community healthcare teams. This contact can be a team or service within a hospital, which will give support to patients and flexibility in staffing. They recommended that the hospital point of contact be available to patients for a limited period of time after discharge in order to improve continuity of care during this period. The committee gave an example of 3 months which was designed to encompass the transition period while still providing a stimulus to ensure healthcare is properly transferred to the appropriate setting. The committee understood that this recommendation would not necessarily be appropriate for rehabilitation patients with long-term and/or complex conditions that require the cooperation of more than 1 agency. Here, a continuing relationship between professionals and service users is important to understand the personal and medical history as fully as possible, in order to better help patients navigate complicated and interacting agencies. Therefore, the committee recommended that appointing a key worker should be considered for patients with complex or long term conditions and/or social care needs. This can be a healthcare or social care professional, depending on which is more appropriate for the person in question. For children and young people, the healthcare or social care professional should also have experience in education and training support, as this will form a portion of their social needs. The committee highlighted additional guidance on the role of a named worker for young people transitioning to adult services, which can be found in the NICE guideline on transferring from children’s to adults’ services for young people using health or social care services.

High quality evidence from the theme ‘External encouragement’ in the adult evidence review showed that people with complex rehabilitation needs after traumatic injury want to avoid isolating themselves from their families, friends and peers. This is especially true as rehabilitation progresses from acute to more long term goals, when engagement can decrease. One way of preventing this was by ensuring that patients are able to continue with their activities and hobbies (either as they previously did or with adjustments for their rehabilitation needs). This finding is supported by low quality evidence from the theme ‘Child’s own motivation’ in children and young people. Parents report that their child’s engagement with rehabilitation can decline after discharge from inpatient settings. However, children and young people might be more enthusiastic if rehabilitation is focused to their interests, or attending sociable activity clubs may increase their desire to continue with rehabilitation. The committee therefore recommended that rehabilitation exercises and tasks should be tailored to individuals, in order to make rehabilitation goals more achievable and results more encouraging.

High quality evidence from the theme ‘Receiving information about services’ from the adult evidence showed that people with traumatic injuries want to be given information about available rehabilitation services, not just medical information. By making this information available to rehabilitation patients, access to these services is increased. This finding was supported by low quality evidence from the theme ‘Information’ described in the children and young people population, where parents reported dissatisfaction with not being given information about the available community rehabilitation services in their area, or how to access them. The committee discussed the importance of patients and their families having a directory of rehabilitation, care and third sector services to refer to when needed. However, in their experience these lists were often difficult to access, with incomplete and often out-of-date information. They therefore recommended that electronic copies of these directories should be kept by rehabilitation units and/or Trauma Networks, and be accessed by patients and their families. These directories should also be tailored to the local area.

High quality evidence from the themes ‘Local availability’ for adults and ‘Services available in the local area’ for children and young people showed that availability is a major barrier to rehabilitation access for both adults undergoing rehabilitation after traumatic injury. This lack of availability can be due to a physical lack of services or long waiting times for existing rehabilitation services. The committee discussed that they were unable to recommend introducing services to underserved areas (for example, rural services) or to increase resources (for example, funds to employ more specialist rehabilitation healthcare staff) due to the economic impact these would have. However, they did believe that people should be informed of these potential barriers to accessing rehabilitation in order to set expectations of when and how rehabilitation can continue. People should be offered alternative means of accessing rehabilitation (for example, local voluntary organisations or national support networks) to prevent delays as much as possible.

Low quality evidence from the theme ‘Peer support’ from the adult review question showed that the opportunity to socialise and interact with peers can promote rehabilitation uptake and engagement, as well as providing an avenue to counteract isolation which many people feel following traumatic injury. The committee discussed their positive experiences with peer support, allowing people the opportunity to gain personal insights and support in a judgement-free environment. However, the committee also reflected that peer support might not be suitable for everyone (for example, some people may feel discouraged if they are not progressing at the same rate as other members of the group). Additionally, members from the committee agreed that information on these groups is often confusing and people’s ability to access these groups can be affected by this. Therefore, they recommended that the option of peer support be discussed fully with people, with information on peer support services included in a self-management programme to explore in their own time. The committee discussed how group rehabilitation sessions are also a good way for individuals to experience peer support, while still being in a supervised environment, which may also limit conflicting information received by people undergoing rehabilitation. This method was supported by the expert witness, who has seen benefits of group rehabilitation in increasing engagement in rehabilitation while also decreasing the cost of sessions. Using both of these arguments, the committee agreed that, while healthcare staff consider offering group rehabilitation sessions if people show interest, they should also be aware that they are not suitable rehabilitation environments for everyone.

High to low quality evidence from the themes ‘Flexibility’ and ‘Local availability’ (both from the adult evidence) showed that adults find it easier to access rehabilitation services when appointments are flexible around work and other responsibilities, and when specialist appointments are available within the local community. This was supported by high quality evidence from the theme ‘Services in the local area’ for children and young people. The committee discussed these facilitators in respect of another theme ‘Technology’ from the adult population. Here, low quality evidence showed that technology and telehealth can be a good method of improving both flexibility and availability of specialist appointments. The committee reported that this is becoming more common due to the advances in video conferencing and the increasing number of people with access to high speed internet. However, there were concerns raised regarding the incoherence within this theme (namely that some people may be worried about the reliability of technology). Additionally, the committee were aware of potential equality issues that a recommendation in this area might raise as, despite the increased coverage, not everyone will have access to the facilities needed to deliver successful remote consultations and appointment. Due to these uncertainties, the committee recommended that technology be considered as a delivery method for both support services and rehabilitation services. However, it should not be used to replace face-to-face consultations and appointments.

High quality evidence from the theme ‘Specialism and staff knowledge’ in the adult evidence showed that people were discouraged from accessing non-specialist healthcare services for their rehabilitation needs. General services are seen to have insufficient specialist knowledge about their specific rehabilitation requirements, which affected the confidence of patients in accessing their facilities. The committee discussed that the reason for this lack of specialist knowledge is not normally due to a lack of interest from healthcare staff. Rather, there is a lack of opportunities for them to gain knowledge and practical experience with rare injuries. Therefore, the committee recommended for health care professionals to have access to the training needed to confidently provide rehabilitation services after complex trauma. The committee discussed that this recommendation may also help build children’s and young people’s confidence in rehabilitation services. Low quality evidence from the theme ‘Child’s feeling to their rehabilitation team’ in this population showed that parents reported that their child was more engaged to access rehabilitation if it was with a team they had developed a rapport with. By increasing the number of healthcare professionals trained in specialist trauma rehabilitation, there is a greater likelihood that continuity within healthcare teams is possible.

The committee discussed the 2 remaining themes found in the adult population, but decided not to use them to make recommendations. High quality evidence from the theme ‘Advocate’ showed that adults with rehabilitative needs reported that their access to services was improved by having people to help organise their rehabilitation appointments. The committee agreed that this an important factor in accessing rehabilitation services, but was aware of the vast resource impact recommendations in this area would have so decided not to make a recommendation. Very low quality evidence from the theme ‘Age-appropriate services’ showed that services appearing to cater for other age groups can discourage adults from attending. Due to the quality of the evidence and potential resource impact of ensuring rehabilitation services are age-appropriate, the committee decided not to use this theme to make a recommendation. The committee did not make a research recommendation in this area due to the large amount of evidence found for the evidence review in general, deciding that other areas of the guideline would benefit more from new research.

Despite only 3 studies being identified for children and young people, and the majority of evidence being of low quality, the committee decided not to make a research recommendation in this area. Within the UK there is a relatively small number of paediatric major trauma centres, making studies in this population difficult. This, combined with the large amount of evidence found for the adult population, meant that the committee decided that other areas of the guideline would benefit more from new research.