Carers Queensland Inc. Submission for Queensland Health Brain Injury Rehabilitation Planning Project

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1 Carers Queensland Inc. Submission for Queensland Health Brain Injury Rehabilitation Planning Project October 2014

2 Submission Title: Brain Injury Rehabilitation Planning Project Date: 24 October 2014 Author: Jocelyn Wills, Manager Client Services North Approved by: Debra Cottrell, Chief Executive Officer Carers Queensland Inc. 15 Abbott Street Camp Hill 4152 Queensland Phone: (07) Website: ABN: Carers Queensland Inc. 2014

3 P a g e 1 INTRODUCTION There are over 2.6 million carers in Australia: parents caring for children young and old with a physical or intellectual disability, adults caring for ageing and frail parents, school kids who have to support an ill or disabled mum, dad or other relative, partners caring for people with alcohol and drug problems. The combined range and scope of the unpaid family caring effort is extraordinarily large. The replacement cost for this significant contribution to society is estimated at over $40.9 billion a year. i More than one in eight Australians provide care of this kind. There are close to 500,000 carers in Queensland. Unpaid carers represent a precious economic resource. It is estimated that $8.3 billion in resources would be required each year from the government s health and community sector to replace the work carried out by unpaid carers in Queensland, were their services no longer available. Caring for a family member can be enriching and rewarding but it can also be demanding, challenging. When a person becomes a carer for a family member or friend, their lives can change dramatically. The responsibility can impact the ability of a carer to have a normal life. Socialising, financial security, education and other opportunities that were once part of everyday life can be diminished because of the challenges involved in unpaid family caring. Additionally, a carer s own health and well being can deteriorate as a result. It is therefore essential that unpaid family carers receive effective support and recognition for their caring role. Carers Queensland Inc. is the peak body representing the diverse concerns, needs and interests of carers in Queensland. Carers Queensland believes that all carers regardless of their age, disability, sexuality, religion, socioeconomic status, geographical location or their cultural and linguistic differences should have the same rights, choices and opportunities and be able to enjoy optimum health, social and economic wellbeing and participate in family and community life, employment and education like other citizens of the State. Through our work, we promote the rights and needs of carers. We also provide direct service provision through programs such as the carer advisory service, counselling, advocacy, no interest loan scheme, mentoring, carer support groups and retreats, information and guided referral. Carers Queensland has specific programs for young carers, culturally and linguistically diverse carers and care recipients, and as a registered training organisation provides both accredited and non accredited training specifically targeted to the learning needs of carers.

4 P a g e 2 SUBMISSION Carers Queensland welcomes the opportunity to provide feedback representing carers in to the submission for Queensland Health s Brain Injury Rehabilitation Planning Project. Carers reported experience of interacting with hospital and medical facilities is that they are often sidelined, not listened to and not understood as the experts in the person that is receiving care. Carer experience when a patient is recovering from brain injury is reported as similar to carer experience often reported to Carers Queensland about engaging with medical professionals. Overall, the experiences reported to Carers Queensland about the opportunities for improvement in the carer and patient experience hinge around rapport building, a feeling of being listened to and valued in the recovery process, feeling that medical staff understand the trauma being experienced by families and carers as well as the patient, and an understanding that each patient that is recovering from a brain injury is an individual and should have individualised service and approaches to care. Carers reported feeling vulnerable, traumatised and overwhelmed at the process that was required to engage in inpatient and outpatient rehabilitation services. Carers reported feeling an imbalance of power between medical, allied health and nursing staff and themselves as carers for the person with an injury. Carers who contributed to this submission had experience with rehabilitation services as inpatient families at BIRU, outpatient services, rural and remote services from Mackay and Townsville, and the ABIOS STEPS program. These carers are parents, partners, siblings and friends. Additionally, patients who are on the journey of recovery have been able to contribute their insights to this submission. Additionally, Carers Queensland have conducted Carer Conversations with carers across Queensland about their experiences with inpatient services and interactions with rehabilitation institutions. Carers Queensland thanks these carers and patients for their time and valuable insights. Service gaps and issues 1. What are the current gaps in rehabilitation provided to people with an ABI by public health services locally and state-wide? (Please consider specialised brain injury and general rehabilitation to transition people with an ABI into the community and/or residential care and the ongoing management of ABI related health conditions.) What opportunities exist to address the current gaps? State wide rehabilitation services are limited in their scope to address need, based on limited staffing and resources. Carer experience indicates that there are gaps in the following areas: Transfer to community care from an inpatient rehabilitation service (BIRU) Lack of information sharing and collaborative approaches between medical, allied health and community rehabilitation teams Inconsistent delivery of services, therapy programs and information about these services provided to families, both at a hospital and rehabilitation level Lack of consistency in delivery of outpatient services, and access to these services in a reasonable timeframe Lack of psychological support post injury, both for the injured person, and the family of the patient.

5 P a g e 3 Inconsistent delivery of medical services inside a rehabilitation unit, and lack of coordination of information about medical requirements for patients (i.e. management of co conditions such as a head wound). Services are not individualised, or person centred based on the level of injury, but are perceived as being generic and unable to be modified to an individual person s needs. 2. What are the future challenges/issues (not mentioned above) for providing specialised brain injury and general rehabilitation services to transition people with an ABI into the community and/or residential care and the ongoing management of ABI related health conditions? What opportunities exist to address these? Transition of people with an ABI in to the community or residential care, as well as ongoing management of ABI related health conditions is complex and difficult to manage well. Carer perspective on the transition of people to community care, as well as for those reintegrating in to the community is that a lack of clear planning contributes to these difficulties. Although Case Conferences can be seen as valuable by families and patients themselves, there are potentially missed opportunities to discuss future planning and goals for families and patients during these meetings, but can be seen as report cards on a patient s injury. Additionally, some of the information shared in these meetings can be confronting and may be better managed 1:1 through a case management model. Lack of clear goal based and future focussed planning, with a person centred and individualised focus Better coordination of medical services and information required, i.e. transitioning a patient to an ongoing GP service with information and briefing provided to the GP/Primary Health care provider Lack of support services to facilitate reintegration, i.e. support to relocate from housing deemed inappropriate due to the injury, workplace reintegration support Opportunities for improvement include: Case management support for each family and person with an injury on admission to a service, or an outpatient program Clear planning opportunities, taking in to account the strengths of each family system and what supports are already available Psychological support post injury for the person and their family members, especially for partners who will potentially be living with and caring for a person who has been traumatically injured, as well as other family members such as children Delivery of outpatient services within a reasonable timeframe, followed up by a case manager for each family.

6 P a g e 4 Integration of services 3. What are, or potentially will be the five most common rehabilitation needs for patients with an ABI which are not necessarily being adequately met by local or state-wide public rehabilitation services? Psychological support post injury for patients and families. Patients often experience brain injury as a result of a trauma (risk taking behaviours, alcohol use or an accident). Patient experience reported is that it is not always appropriate to speak to family members as they feel both guilt and blame. Carers and families would also benefit from the opportunity to speak to a psychologist about these issues. Appropriately qualified and trained allied health and medical staff who are aware of carers and family systems, and able to include families in decision making and therapy programmes. Focus required on speech pathologists and OT specialists. Family and carer support services, including information, support group opportunities and information sessions Individualised, person centred services and planning for families and the person with an injury Follow up on rehabilitation needs post discharge from state wide rehabilitation or local programs 4. How are these needs best met working within the current health care system? Provision of a qualified psychologist at centres such as BIRU and programs such as STEPS, as well as referral to a psychology outpatient service in regional and remote centres such as Townsville, Cairns, Mackay, Rockhampton, Wide Bay, Toowoomba, Gold and Sunshine Coasts Utilisation of services such as Carers Queensland to provide specialised carer support groups and referral for families who require ongoing counselling support Professional Development opportunities for current staff to learn more about family systems and structures and the role of carers in these systems Development of out of home care plans and models to reduce the burden on the system (beds) when there are appropriate family supports and structures available. 5. Are there areas of concern in communication, coordination, networking and collaboration of rehabilitation health services for people with an ABI and what are the opportunities to resolve these concerns? (Please consider service coordination between specialised, general and community rehabilitation services, residential care and the ongoing management of ABI related health conditions). Carer experience reported to Carers Queensland about the integration and cross collaboration of services involved in responding to brain injury is that the communication, coordination, networking and collaboration between these services is lacking, as is communication about these services to families and carer networks. Examples of this include: Delivery of outpatient services when a patient has been discharged out of specialist rehabilitation units is not reported as an easy process or program to engage with by carers of people with an ABI. Inconsistent information and service delivery is also recurrent,

7 P a g e 5 where some patients are told that they will be receiving services within a certain timeframe and then these services are not delivered. Follow up services for people who have experienced brain injury are reported by carers as poor, with no consistent follow up services provided to people who had been in rehabilitation units. Carers reported feeling that the facilities were not appropriate for the level of care required for some people recovering from a brain injury, and that all patients were in together. Patients experiencing a varying level of injury and disability did not have the opportunity to meet with or discuss their experience with people experiencing a similar level of injury and found the inpatient experience overwhelming, disheartening and frightening. Opportunities for improvement include: Case management support for each family and person with an injury on admission to a service, or an outpatient program Coordination services through a rehabilitation nurse or similar Follow up schedule (every quarter for 12 months) with a phone call, service review or rehabilitation nurse visit to monitor planning Appropriate induction and introduction processes to ensure patients and their families understand how an inpatient service works, what can be expected and how families can be involved. Robust 12 month future focussed planning to ensure goals are being worked towards and met, reviewed at quarterly meetings. One family experience reported to Carers Queensland was that family members and the person with an injury waited for 2 hours to be booked in to BIRU, without any contact from staff while waiting inside the unit. An opportunity exists to have a comprehensive induction or introduction process to the unit so that families and patients have some clarity on what to expect over the coming weeks or months. 6. Are there issues in the referral or transfer of ABI patients requiring rehabilitation (including those with a mental health disorder) and then back to local community or residential care and how can they potentially be resolved? Transfer of patients requiring rehabilitation back to the local community is a key transition point which can be improved in the view of carers and patients. Limited transfer of information between primary health care providers (GPs) or coordination of handover to these providers Limited transfer of information to rehabilitation at home options, such as relocation or moving house, installation of rails, OT supports Limited access to timely support to reintegrate in to the community through activities such as driving and assessment to be approved for these activities again No reintegration meetings or opportunities for patients or families to discuss issues about community care with a psychologist are available Case conference meetings do not discuss goals and options but rather updates on a patients current condition. Utilisation of these meetings to discuss opportunities for

8 P a g e 6 improvement and strengths based approaches for recovery is an opportunity not currently being explored. 7. Are there significant gaps or issues between brain injury rehabilitation services and supporting clinical services (e.g. neurosurgery, mental health, imaging, etc.) and how could these be resolved? Carer experience in rural and remote communities is that waiting for scans and images to be viewed at large hospitals with neurosurgeons (i.e. Townsville) causes angst as the waiting time for response about someone who has experienced a brain injury can be significant. Clinical handover can be poorly managed between units, departments and facilities. Management of additional medical conditions (e.g. a head wound) are poorly managed during rehabilitation in patient and carer experience. Management of head wounds required significant input from family members arranging dressing changes, speaking to nursing staff about treatment and arranging consultations with medical staff. Inconsistent medical information was provided to carers and these meetings were held on occasions without a carer present. Information provided to patients can be overwhelming and was not reported as being delivered in a sensitive or understanding way. Opportunities for improvement include: Case management support for each family and person with an injury on admission to a service, or an outpatient program Case management team/rehabilitation nurse to coordinate services for patients including medical handover to ensure the family and patient had one point of contact. Specific population groups 8. Do specific population cohorts (e.g. children transitioning to an adult service, Aboriginal and Torres Strait Islander people, culturally diverse persons, older persons, interstate/overseas residents, regional and remote residents, or others) place particular service demand on brain injury rehabilitation services? How can services for these people be improved? Carers spoken to for this submission were from mainstream backgrounds and did not have any additional support requirements such as interpreters or additional disability. It is worth noting though that carer experience for people from CALD or Aboriginal and Torres Strait Islander carers can often include feelings of isolation and lack of understanding of Western medical model approaches, lack of clear communication and information provided in appropriate formats, and the use of the term carer in these communities. Carers did say that they felt they were lucky to be engaging with the system with English as their primary language, as they felt it would be impossible to understand all the processes if they were from a CALD background. Carers also noted the lack of resources for people in languages other than English.

9 P a g e 7 Education, research & innovation 9. What workforce teaching and learning or research activities relating to care for ABI patients could benefit with improvement? How could this be achieved? Carers expressed that if staff had additional training on the following areas they felt that relationships with families would benefit: Communication skills and engaging with family members Carer awareness training Value of carers and family networks in recovery Future planning and goal setting processes, an individualised approach 10. What innovations (e.g. changing models of care and/or practice, emerging technologies or changes in workforce roles) could be adopted to enhance service delivery and/or improve patient outcomes? Carers stated that the model of care for intensive rehabilitation is positive, and they believed that intensive therapy provided at BIRU is a good model when implemented as it is intended. All carers expressed however that this was not the case, and that therapy arrangements changed on a daily basis. The following ideas were expressed by carers on changing models of care and practice, and workforce roles that could be adopted to improve family and patient outcomes: Enough chairs provided at dining room tables in inpatient rehabilitation to encourage family meals and interaction between families and patients Dining room set up in a welcoming way for families and carer interaction Welcoming areas for families, carers and patients including spaces where families can eat together, share and make a cup of tea together and feel welcome to be part of the recovery team Weekly therapy routines mapped out so that carers, families and patients know what is to be expected at these times. A workplace role for a rehabilitation nurse to become a case manager and oversee navigation and case coordination for families Psychologist based at BIRU and other centres, or outpatient referral to psychology services Future planning processes and review processes for families recovering from brain injury. Planning for success 11. What aspects of brain injury rehabilitation service delivery currently work very well that should be maintained and/or repeated? When done well, carers expressed that good communication made all the difference to their experience. As outlined above, carers felt that there was an opportunity for the model to be effective (intensive therapy and inpatient services) but the missed opportunity was in the delivery of these services.

10 P a g e 8 Carers expressed that the opportunity to access these services was appreciated, but the lack of consistency in the service delivery made them feel frustrated and anxious that the patient was receiving the best care available. Carers also expressed that weekend release or time at home with family was highly valued. 12. What are the three key issues you would like to see improved to enhance brain injury rehabilitation service delivery and/or improve patient outcomes over the next five to ten years? Three issues identified by carers were: 1. Case manager to oversee the coordination of care of each patient and family. This would give one point of clinical contact to manage medical, clinical and rehabilitation both while in an inpatient service and throughout discharge. It was also expressed that this may lead to a higher degree of flexibility in service delivery, if staff get to know the patient and family as individuals, programs could be tailored to be person centred. 2. An increase in family health literacy around understanding brain injury and recovery. This could be done through education, information and psychology services. These family support programs could also engage other community services (Carers Queensland, employment providers, community rehabilitation providers, private allied health professionals) to encourage a wraparound service delivery model 3. Psychologist available on staff for both patients and families to access on intake, and throughout the rehabilitation journey, with a focus on community reengagement and reintegration. Underpinning all of these issues was the need for better communication with families and carers. Less use of jargon and overwhelming terms at a time when families are experiencing trauma. All carers expressed that they did not feel listened to at points throughout the rehabilitation process. Carers also reported feeling that once this trust had broken down with the rehabilitation unit it was very difficult to regain. Families and carers all expressed that rehabilitation was only part of a person s recovery journey and that the patient would be part of a family network forever. Strengthening this family network and providing the skills they need to manage a patient s condition at home are key to better patient outcomes. Three issues identified by patients were: 1. Psychology support services, specifically on intake to inpatient rehabilitation and outpatient reintegration 2. Explanations on what can be expected, understanding that the patient may be a different version of themselves and adjustment strategies, using psychologist support 3. An individualised approach, fit for each patient. Patients reported feeling that they had to fit the system of what was available, and they were not consulted on their own care needs, goals and aspirations. 13. What opportunities are there to resolve these three key issues? Please see above.

11 P a g e What measures of success would you use to determine whether these three key issues or other objectives were being successfully achieved? Carers felt there would be more engagement with the service if they were made to feel welcome and that their input was valued. The ways they reported that this could be measured would be: An increase in carer and family participation A reduced number of complaints Family feedback and evaluation Follow up to measure increased community engagement of a person with a brain injury (returning to work, evidence of injury) Higher levels of motivation for patients to engage in rehabilitation activities and therapy after discharge from formal programs. ii Access Economics. (2010). The Economic Value of Informal Care in 2010.

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