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Brain Injury Association of Tasmania

Acquired Brain Disorder Community Liaison Officer Project Interim Report (January 2016) Supporting families at the point of patient diagnosis through to post hospital discharge and into community care


Acquired Brain Disorder Community Liaison Officer Project - Interim Report

January 2016

Acknowledgments The Brain Injury Association of Tasmania (BIAT) would like to acknowledge the support of the following people whose support has been instrumental in the development of this pilot project:• MS Sharon Strugnell, CEO BrainLink Services Ltd, Victoria • Ms Suzanne Hilton-Shaw, Community Liaison Officer, Royal Melbourne Hospital, Victoria • Ms Andrea Hitchens - Nurse Unit Manager, Tasmanian Neurosurgical Unit, Royal Hobart Hospital • Mr Albert Erasmus - Neurosurgeon and Director of the Tasmanian Neurosurgical Unit, Royal Hobart Hospital • Professor Mark Slatyer - Rehabilitation Physician and Director of Rehabilitation, Royal Hobart Hospital. • Mr Brendan Bakes – Nurse Unit Manager, Acute Rehabilitation Unit, Royal Hobart Hospital • The multidisciplinary team and nursing team of both neurosurgery and rehabilitation, Royal Hobart Hospital • Carers Tasmania Inc BIAT also acknowledges and sincerely thanks the Tasmanian Community Fund for providing the funding for the pilot project.

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Acquired Brain Disorder Community Liaison Officer Project - Interim Report

January 2016

Background The Brain Injury Association of Tasmania The Brain Injury Association of Tasmania (BIAT) provides a public voice for all Tasmanians living with or affected by brain injury. BIAT provides support and advocacy for organisations in the community that work with people with acquired brain injury (ABI), and has a key role in activities that contribute to a community that is more informed about brain injury. BIAT advocates for Tasmanian Government policies, programs and services that reflect the needs and priorities of people living with or affected by brain injury. It provides input into policy, legislation and program development through active contact with Tasmanian Government ministers, parliamentary representatives, Tasmanian Government departments and agencies, and other disability and community organisations. With our peak role and focus on ABI, we seek a society where: • people affected by ABI feel understood, respected, and includes; • laws and systems are just and fair, and people with ABI access them without discrimination; • health and community services for people with ABI are respectful, responsive, and meet demand; • people with ABI participate fully in community life; and • the incidence of ABI is much reduced. Through the provision of training, education and resources, BIAT works to promote awareness and understanding of the impact of ABI to families, communities, and service providers. BIAT is also focused on ensuring the National Disability Insurance Scheme (NDIS) truly reflects the lived experience of ABI, in all its disparateness and diversity.

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Acquired Brain Disorder Community Liaison Officer Project - Interim Report

January 2016

Description and Overview of the Project A brain injury is potentially one of the most devastating disabilities; it is ten times more common and produces, on average, three times the level of disability than spinal cord injury (Brain Injury Australia, “Submission to the Productivity Commision’s Inquiry into Disabilty Care and Support”, 2010). Many people living with or affected by brain injury find it difficult to find, locate and access current channels or sources of information. This is true at the time of diagnosis, on recognition of a problem, and through subsequent phases including many years later. The role of the Community Liaison Officer (CLO) is to provide support to family and carers who have loved ones with acquired brain disorders (ABD) admitted to the busy Royal Hobart Hospital (RHH) neurosurgical environment, and to continue to support them through the rehabilitation process and into the community and primary health space. There has long been concern by hospital and primary health clinicians that people with ABD are at high risk of being lost in the system due to physical and cognitive impairments. Likewise, families and carers may be overwhelmed by stress and the complexity of the health system and may not always absorb the information given to them by treating clinicians. The Community Liaison Officer has the opportunity to maintain contact with families once they are discharged from the RHH, to support the referrals made by clinicians in the hospital on behalf of the patient, and to link family members to appropriate services in the community as required. The project ensures families are provided with information and referrals specific to their condition and region enabling them to seek immediate support post hospital care. This increases life opportunities for the patient as their recovery potential is maximised. Carers are also supported with practical knowledge on how to be carers, how to maintain their own well-being and information on where to seek ongoing support as new issues arise. Direct contact with families from time of treatment/diagnosis allows BIAT to better understand immediate needs; BIAT can then increase its support in specific areas in an informed manner, fill any service gaps, and tailor care. The BIAT Community Liaison Officer (CLO) pilot project is modelled on BrainLink Servies Ltd Royal Melbourne Hospital and Monash Medical Centre Community Liaison Project. The overwhelming success of BrainLink’s project has resulted in the position being rolled out to an additional five hospitals across Victoria.

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Acquired Brain Disorder Community Liaison Officer Project - Interim Report

January 2016

Project Rationale The need for this project stems from a gap in service between the acute (hospital) sector to the highly complicated community care sector. When a patient is being treated in hospital their immediate needs are well attended to by hospital staff. Once they leave the hospital however, there is a gap in service delivery. It is often difficult for families to know where to seek assistance particularly as the community sector is highly fragmented; the services provided by the CLO bridge this gap. Upon leaving hospital, most people are not aware of the supports they may need, or cognizant of the specific services available to them. This results in many families not benefiting from existing community services and often as a consequence, not maximising a person’s recovery potential. It is common for people to realise that they require assistance and support when in the community that was not anticipated whilst in hospital. By establishing a relationship with patients when they are an inpatient and/or their families, the Liaison Officer serves as an approachable point of call for people once discharged. Research has established that caregiving is stressful and informal caregivers are at high risk for adverse physical and psychological consequences of caregiving. It is a wellknown fact that caregivers are prone to depression, grief, fatigue and changes in social relationships; they may also experience physical health problems. Perceived caregiver burden has been associated with premature institutionalisation and patient reports of unmet needs. However, caregivers who report a high level of preparedness for caregiving experience lower levels of caregiver strain. Information, practical support, continued education and easy access to health and community options can combat carer burden and overload, family isolation and emotional distress.

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Acquired Brain Disorder Community Liaison Officer Project - Interim Report

January 2016

Benefits of the project to the Tasmanian community Brain injury has become a silent, unrecognised public health epidemic with the sociological effects having a domino effect on individuals, family, and the Tasmanian community. This injury has a direct impact on suicide rates, petty and major crime rates, drug addiction, alcoholism, violence in the family home, employment and discrimination within the social welfare state, along with impacting on the social and political economy. Many people with brain injury continue to experience problems with social interactions several years post injury. The provision of information, understanding, and personal support at the point of treatment/diagnosis and ongoing support into the community can only serve to enhance social inclusion, physical and psychological well-being, and career opportunities for people living with or affected by brain injury. This will deliver indirect and lasting benefits to the Tasmanian community by building on and enhancing ongoing community education, increasing access to and enhancing the role of a range of existing community based services, and reducing the need for intensive, often crisis driven, and far more costly specialist services.

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Acquired Brain Disorder Community Liaison Officer Project - Interim Report

January 2016

Project Objectives • Assist over 100 families and carers affected by brain injury/neurological conditions through the provision of information, education and support about access and referral pathways from hospital to community; • Bridge the gap between the acute care setting and transition to community services, through collaboration, and the building of strong relationships with key Royal Hobart Hospital personnel; • Develop and maintain contact with referred patients and their families and be a recognised follow up ‘face’ as needed; • Participate in RHH clinics, discharge planning and family meetings if required; • Be a recognised provider of consistent information that is far reaching in what it offers, providing people living with brain injury/neurological conditions, their carers and families with current, accessible, independent and objective information that supports self-management and individual choice; • Promote the Brain Injury Association of Tasmania as the first access point for referral to community services on discharge; and • Identify and participate fully in in collection of data to evaluate outcomes of this project.

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Acquired Brain Disorder Community Liaison Officer Project - Interim Report

January 2016

The Project Scheduled to commence in January 2015, an extension to the start date of the project was sought to facilitate the appointment of Jenny Langley (Masters of Clinical Nursing (Neuroscience)) to the position. The Tasmanian Community Fund transferred the project funding to BIAT in April 2015 and Jenny commenced at the beginning of May. A four-month delay by the Royal Hobart Hospital in preparing and signing a Deed of Agreement covering Jenny’s role in the hospital resulted in some initial access restrictions.

Family members referred to the Community Liaison Officer To date fifty three (53) people have been referred to the CLO; 33 of these were female, 20 male. The position held in the family can be seen in Table 1. Most of the family members/ carers seen by the CLO were female partners (17), male partners/carers (10), mothers of children with ABD (9), daughters of parents with ABD (5), sons (3), siblings (3), fathers (1). Of note is that 5 people did not have anyone who was able to actively care for them following their admission to hospital, or they were carers for others in addition to their own need.

Table 1. The age range for the people affected with ABD was from 12 – 87.

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Acquired Brain Disorder Community Liaison Officer Project - Interim Report

January 2016

The diagnosis of people with ABD can be seen at Table 2. The majority of families of people referred to the CLO had a loved one with a traumatic brain injury (TBI). Nine of these injuries were in the mild category, 4 in the moderate and 6 people with severe TBI. This was followed by families of people with malignant tumours of the brain. Those with glioblastoma multiform numbered 6, there were 3 lower grade astrocytoma’s and 4 with cerebral metastases. Subarachnoid haemorrhage and other haemorrhagic strokes numbered 5 each. There were 4 people with meningioma’s whose family requested follow up due to the anxiety they had around the recovery from surgery not because their family member had any ABD associated with the surgery. One woman, a single mother of three children, sought follow up with the CLO following posterior fossa surgery to remove an ependymoma. The remaining diagnoses include encephalitis, multiple sclerosis, elective clipping of an aneurysm and elective coiling of the same, normal pressure hydrocephalus and one person who had not been diagnosed but was experiencing functional decline.

Table 2. Diagnosis of family member

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Acquired Brain Disorder Community Liaison Officer Project - Interim Report

January 2016

Geographically families were divided into 3 categories: • 30 families were from the southern region of Tasmania (62 phone region); • 13 families were from the northern region of Tasmania (63 phone region); • 10 families were from the north-west region of Tasmania (64 phone region). A meeting room was provided by the neurosurgical ward for the CLO to meet privately with family members/carers. Once people were referred, the CLO approached them to ask if they would like to meet to talk about how they were coping having a loved one receive a diagnosis of ABD. These meetings were informal and driven by the recipient’s need to talk, find out information and seek support. Consent is obtained to ‘record freely given informed consumer consent to share their information with a specific agency/ies for a specific purpose/s’. There are few services to refer people in this situation to in Tasmania. As a nurse with extensive knowledge and clinical experience in this area, the CLO was able to provide people with information about ABDs and relevant support without engaging other services. This was particularly important when people’s family members were displaying cognitive, physical or emotional changes that the family were unprepared for. Family members found this a very useful service as the CLO was able to “take time to listen to them” and to “be able to speak from her own experiences on how patients continued to improve and how to help to support the patient’s impairments”. Spending time with individuals allowed them a safe place to express themselves and this often allowed them to grieve for the situation they were going through. A mother of a 21-year-old man who was involved in a trail bike accident in the north of Tasmania was referred to the CLO. The young man was in a state of post traumatic amnesia following his injuries and was loud and aggressive towards his parents, did not understand what had happened and was unco-operative with staff. For his mother the CLO’s support was a “practical and calming support that she was not able to get from staff or family”. The young man has since been discharged and the mother and CLO are still in touch to ensure she is supported through Carers Tasmania and brain injury services in the region. Meetings with families ranged in time from under 30 minutes to 2.5 hours depending upon the needs of the family. Meetings under 30 minutes numbered 62, one hour meetings 22, 1.5 hour meetings 12, 2 hour meetings 6 and 2.5 hour meetings 7. Page 9


Acquired Brain Disorder Community Liaison Officer Project - Interim Report

January 2016

On average families have 3 meetings with the CLO. The range can be seen in Table 3. At present the CLO has 18 families still engaged and is receiving 2-3 new referrals a week.

Table 3. Number of meetings per family

The Community Liaison Officer provides services otherwise not available on the Neurosurgery ward and, as such, has received overwhelming support from hospital staff with staff describing it as an invaluable service providing support, education, counselling and empathy for families and patients with acquired brain disorders. The role is complimentary to the social workers practice and, through the provision of information and guidance enhances the practice of others on the ward.

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Acquired Brain Disorder Community Liaison Officer Project - Interim Report

January 2016

Referrals from CLO on behalf of family/carers • • • • • • • • • •

Carers Association of Tasmania Brain Injury Clinic/Community Rehabilitation Unit Anglicare family counselling/alcohol and drug counselling Social Work – RHH Social Work - Community Peace of Mind Foundation Victoria Cancer Council Neuro Liaison Nurse Primary Health Tasmania Road Trauma Support Team

In addition to the hospital role, the CLO was asked to speak at the Victorian and Tasmanian chapter of the Rehabilitation Nurses study day on the CLO role, and to participate in a panel discussion at the National Clinical Oncology Conference in Hobart about supporting people with brain cancer in the community. Meeting with families in hospital at the point of diagnosis allows the CLO to set up a relationship that prepares the family for a successful discharge into the community. BIAT believes that, in time, this will result in fewer patients being lost to follow up, greater resilience of family members when caring for their loved ones, and a decreased demand on other services.

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Acquired Brain Disorder Community Liaison Officer Project - Interim Report

January 2016

Appendix Appendix A

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Acquired Brain Disorder Community Liaison Officer Project - Interim Report

January 2016

Case Study 1 – Angela* 1 October 2015:- Met with Angela whose 21 year old son Mark* had a severe traumatic brain injury (TBI) following a trail bike accident in Launceston. Mark was experiencing post traumatic amnesia at the time which was confronting for Angela and Mark’s father Peter*. We talked about Mark’s condition and Angela asked me about my experiences with people who had had similar injuries. Angela lives at Ringarooma and has a history of anxiety which she has been treated for in the past. Angela was also very upset as Mark’s father, her ex-husband, had recently been diagnosed with pancreatic cancer. Mark was living with his father prior to the accident and Angela was concerned how they would all cope. Peter’s medical team in Launceston organised for his treatment to be continued in Hobart dependent upon the length of time Mark would be in hospital. I walked Mark’s parents around to the cancer centre ensuring they were aware of the services that existed in the Royal Hobart Hospital. I also contacted Jo Wood, the oncology outpatient social worker, to make her aware of Peter. Angela and I agreed to meet every couple of days in the hospital so she would have someone to talk to, ask question of, or call if she needed to. 14 October 2015:- Met with Angela today. Mark is improving, is orientated, and participating in rehab. Angela was anxious waiting to see Mark’s specialist and was very confused about when Mark was to be discharged; I assisted her in coming up with questions to ask the specialist. I also spoke with the nursing staff about Angela’s need for information. After the rehab team planned Mark’s discharge I gave Angela a copy of the Synapse publication ABI - The Facts. I spoke with Angela a couple of days after giving her the publication and she said it was very helpful however she did say she was glad I hadn’t given her the publication any earlier as it would have been overwhelming. 2 November 2015:- Called Angela. Mark has been discharged and is living at his dad’s. Peter is coping at present with Chemo and with looking after Mark; Angela will go into Launceston if Peter needs her to. Mark starts outpatient rehab on Thursday in Launceston.

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Acquired Brain Disorder Community Liaison Officer Project - Interim Report

January 2016

21 December 2015:- Called Angela today. She is well but feeling a bit detached as she is living at Ringarooma and Mark is in Launceston with Peter. Mark has been able to keep all his appointments with Peter’s help. Peter is well enough given his cancer. At this stage Angela and Peter don’t really have a clear idea of expectations for Mark and don’t remember receiving any formal feedback from Mark’s neuropsychological testing. I will talk to rehab staff tomorrow to see what I can find out from them and pass it on. I contacted Tasmanian Acquired Brain Injury Services (TABIS) in Launceston re visiting Mark and they have done this. I was not able to find out anything further from the rehab team so suggested to Angela they ask the doctor who sees them at the outpatient clinic to provide them with this information. I will call Angela again in a month to see how she is going. *Name has been changed

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Acquired Brain Disorder Community Liaison Officer Project - Interim Report

January 2016

Case Study 2 – Craig* 15 July 2015:- Craig is a 32 year old man whose wife, Mary*, also 32, had just been diagnosed with a grade 2 astrocytoma. I met Craig and Mary on the ward and introduced them to my role. They said they felt everything was going fine so I gave them my card and told them they could call me if they had any questions. I also suggested I would call Craig when Mary had been discharged to see how things were at home. Craig called me on 17th of July with some questions. He was very anxious and did not feel he had a clear understanding of Mary’s goals of care. I offered to go to their home to see them as I felt Craig needed significant reassurance. When I arrived at their house Mary’s father was also present. Craig and his father-in-law did not feel they had sufficient information to understand some of the symptoms Mary was displaying. These included concerns around her:• • • •

short term memory fatigue medications follow up appointments

I ran them through some basic anatomy and physiology to assist with their understanding of why Mary had some short term memory problems and her fatigue. We looked through her medications to ensure they had everything that was prescribed and I reassured Craig about the pain control regime that had been suggested for Mary. Unfortunately the medications had not been documented on a regular pharmacy sheet usually supplied to families. I suggested they could discuss any medication issues with the local pharmacy or they could phone the hospital. They did both of these things. They had either not understood or had not been told about the outpatient appointments system where letters are sent out after a patient is discharged. They had asked the doctors for further clarification because they did not understand who Mary needed to see and when. They had received, on a scrap piece of paper, a list of who Mary would need to see and were very upset about the perceived lack of process. I spent close to 2 hours with them allowing them to vent as well as providing information around Mary’s condition.

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Acquired Brain Disorder Community Liaison Officer Project - Interim Report

January 2016

I followed up on the ward with the Neurosurgical Unit nurse unit manager (NUM)as, in supporting the Community Liaison position, she wanted to be made aware of any problems patients and their families incurred. 21 July 2015:- Contacted Craig. They had been into the RHH to have Mary’s clips out. They had a good talk to the registrar and felt much better about the information they had been provided with. 28 July 2015:- Mary re-admitted to the neurosurgical ward with a wound infection. Will continue to support Craig.   3 August 2015:- Received a call from Craig. He was very upset with medical team for speaking to Mary without him being present; he felt this had been a feature of her admission. Mary was often the person given information by staff but could not remember the information when Craig came in. He felt they had received conflicting information from the clinical team which lead to the infection and that the staff were blaming him for it. As I was at home at the time, Craig was directed to the Neurosurgical Unit NUM, Andrea Hitchens. 4 August 2015: I spoke with Craig on the ward. He felt more settled having spoken with Andrea. Mary had been moved to a quieter room and was able to rest more. I said I would call them after Mary was discharged. 14 August 2015:- I called Craig to see how he was following Mary’s discharge. As there was no answer I left a message indicating that if things were OK he didn’t need to return my call and that I would follow up with him the following week. 19 August 2015:- Contacted Craig. They are feeling settled for the moment while the path into oncology becomes clearer. Mary may be entered into a drug trial and will have chemotherapy and radiotherapy conjointly. Craig feels they are coping at this stage. He will call if he has any problems and if I don’t hear from him I will call in 2 weeks. 30 September 2015: Called Craig today. Left a message. I last spoke with Craig in September. I had sent him a questionnaire about carer burden and the community liaison service provided. He was very apologetic about not having sent it back and stressed BIAT’s input was extremely helpful, that he had better information, and as a result of support provided was now in a position where he could cope with being back at work and supporting Mary. Craig will call if he needs to however to date I have not heard from him. * Name has been changed Page 16


Acquired Brain Disorder Community Liaison Officer Project - Interim Report

January 2016

Case Study 3 – Susan* Background Susan is a 40-year-old woman who was referred to the Brain Injury Association of Tasmania (BIAT) for support while she was going through a settlement process with the Motor Accidents Insurance Board (MAIB). Whilst this would normally not be considered core business for BIAT there was no-one else with a background in understanding the needs of people with acquired brain injury (ABI) to support Susan in this matter. The referral was made by Chris Oriel who worked with Susan as her literacy support worker at Sorrel library. He initially approached the (DHHS) Community Rehabilitation Unit for support however they determined it was outside of their scope. Headway rebuilding lives (Hrl) was also approached but they had a waiting list and were unable to assist Susan in the required timeframe. Susan had a motor vehicle accident (MVA) 5 years ago. She sustained a closed head injury and a complex fracture to her right arm. At the time of hospitalisation, she underwent surgery to her arm. Although Susan was told she had a brain injury and needed to stay in hospital she refused to stay and signed herself out. Susan received ongoing surgery and support in relation to the injuries to her arm but did not follow up in relation to her ABI. As a result of her ABI she complained of:• Fatigue • Confusion under stress • Inability to follow conversations • Inability to plan • Inability to cook She lives at Spring Bay. Her ex-partner lives with her and is her carer. She drives to Sorrel but her ex-partner drives her if she needs to go further than this. Susan presents a strong work history and would like to return to some type of employment. Previously she has been a farm hand, worked with horses and been an oyster splitter.

Meeting with MAIB Jenny Langley from BIAT agreed to assist by attending the MAIB negotiation with Susan and Chris Oriel. It was clearly stated to, and understood by, Susan that this role was one of support and not one that would provide any advice to Susan or her lawyer that would influence the case.

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Acquired Brain Disorder Community Liaison Officer Project - Interim Report

January 2016

The negotiation took place in Launceston; Susan travelled to the meeting separately with her carer while Jenny and Chris travelled together from Hobart. Introductions were made to Susan’s lawyer (L1) and he outlined the case to Susan. At this stage Susan was argumentative and it was difficult for her lawyer to gain her confidence. Jenny assisted by breaking down the information into more manageable parts for Susan, and Chris discussed with Susan how she expected the meeting to run. These interactions were useful to both Susan and her lawyer. We met with the MAIB team - a barrister (L2), a solicitor and the MAIB representative. Introductions were made and L1 and L2 discussed outstanding issues from the last meeting and reviewed the supporting evidence. This way this was done made Susan feel separated from the process and she became agitated, asking Jenny to talk to the lawyers about her condition. Jenny made a comment that spoke to the concerns of people with ABI in general and L2 responded by advising Jenny he worked with people with ABI “every day of the week”. The brief discussion ended with L2 asking L1 for a cash figure to present to the MAIB team. Both teams retired to discuss the matter. At this stage Susan was very irritated. Her lawyer tried to work with her around identifying the sum of money she should ask for. He wanted to work on a worst case scenario and a best case scenario presented against three categories:• Pain and suffering • Loss of income • Future care. Susan was unable to focus on this and wanted to leave for a cigarette. Her lawyer asked Chris to scribe for him so he could draw up a proposal. Jenny left Chris and the lawyer and accompanied Susan while she had her cigarette. They talked over the different categories and her hopes for the future at this time. Susan expressed a desire to find work and to have a place of her own where “no one could bother her”. After the cigarette Jenny and Susan re-joined her lawyer and Chris where her lawyer again explained the process to Susan. She was more receptive and agreed with the suggested asking figure of $1 million. This was a change for Susan as she had originally thought compensation in the order of $1.9 million would be the minimum amount she would accept. Susan’s lawyer left to inform the MAIB team. While waiting the need for such a sum to be managed was discussed and Susan shared her thoughts on how she may do this.

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Acquired Brain Disorder Community Liaison Officer Project - Interim Report

January 2016

The MAIB team countered the amount and offered $600 000. Susan’s lawyer advised he needed to organise an OT assessment of Susan’s cooking skills (this was the area of greatest dispute and an assessment had not been done). Susan again became agitated, thanked Jenny and Chris for their support, and left. Her lawyer also thanked Jenny and Chris for their help and said he felt Susan had made more progress during this meeting than she had at any other time. Chris and Jenny were going to go after Susan however decided against this as she was meeting her carer. The meeting took an hour and a half.

Outcome Later in the day Susan rang Jenny and Chris. She said she had thought about the meeting and advised she had decided to take the offer. Chris suggested she was in a good position to counter the offer and Susan stated she would ask for the $600 000 plus the sum she owed Centrelink (about $75 000). She said she would like to buy a small property on the East Coast then work with Jenny to find a service provider who could assist her with some vocational rehabilitation. She thanked Jenny and Chris again and said she would call to let them know the outcome.

Benefits of BIAT’s support • • • • •

Susan did not have to rely on anyone else None of Susan’s family or friends knew about her financial situation Her lawyer was happy for Jenny to break information down for Susan and he appreciated being supported in this manor Susan did not feel the table was “stacked” on MAIB’s side The defensive nature of Susan’s agitation was eased by the independent support allowing easier discussion and a resolution

*Name has been changed

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Acquired Brain Disorder Community Liaison Officer Project - Interim Report

January 2016

Appendix Appendix B

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Acquired Brain Disorder Community Liaison Officer Project - Interim Report

January 2016

Feedback Feedback in regard to people experience with BIAT’s Community Liaison Officer was sought in late January 2016. Questions asked included:• How long was your family member in hospital? • How soon after your family member was admitted did you meet Jenny, the CLO? • Would you have liked to meet with Jenny earlier? • How did you learn about the CLO position (ie referred by social worker or other hospital staff member, approached directly by Jenny)? • Was meeting with Jenny useful to you? If yes why, if not why? • Would you recommend other people in your situation have the opportunity to meet with the CLO? If yes why, if not why? • Have you maintained contact with Jenny after your family member’s discharge from hospital? If yes why?

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Acquired Brain Disorder Community Liaison Officer Project - Interim Report

January 2016

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Acquired Brain Disorder Community Liaison Officer Project - Interim Report

Was meeting Jenny useful to you? Yes

Yes

Yes

January 2016

Comments Very helpful for me (my family and I live in NW Tasmania and travel back and forth regularly). Jenny visited my wife and me in neuro; Jenny also phoned us at home. Prior nursing experience and understanding of what family members are going through was very helpful when dealing with the unknown and a stressful situation. Made me aware BIAT existed - would liked to have met or spoken to others in our situation.

Yes

Gave us an idea of community resources available to us.

Yes

Michael needed advice on the situation he was in.

Yes

In explaining to me what actually happened.

Yes

Explained a lot that we were unaware of and put us onto some good websites.

Yes

Without Jenny I would not have understood my partner’s condition and her compassion towards all of us was outstanding.

Yes

Jenny supported me during a difficult time especially being relocated 3 weeks prior. She was patient, kind and a pleasure to have on my team to getting well.

Yes

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Acquired Brain Disorder Community Liaison Officer Project - Interim Report Was meeting Jenny useful to you? Yes Yes Yes Yes

January 2016

Comments It let me know there were people out there who cared about what happened to me. Just general information she gave us, a very caring person. To have the knowledge that there is someone or an organisation to provide support is comforting. Also being able to discuss concerns etc. with a third party was a good stress reliever. Answered questions

Yes

She was extremely helpful, informative, friendly and supportive. Situation would have been much more difficult without her.

Yes

Someone to talk to

Yes

Somebody to talk to, know what was available outside

Yes

She was a very nice lady, listened to what I had to say. Answered questions I had and helped me understanding things that I didn’t.

Yes

She knew who I should speak to, and told us about resources

Yes

She was the only person to talk to about our worries for Jamie’s and our future.

Yes

Ongoing support by telephone

Would you recommend Jenny to other people?

Comments

Yes

In my situation (not familiar with anyone in Hobart) Jenny was a very warm and sincere CLO.

Yes

To help with a grieving situation and offer advice on family support

No

Felt it was something done as a part of her job, not a lot of follow up

Yes

Yes, as per previous comments

Yes Yes

To give a more detailed explanation of what to do etc.

Yes

It’s very good to have support

Yes

Jenny made it easier to deal with the injury and the day to day changes

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Acquired Brain Disorder Community Liaison Officer Project - Interim Report Would you recommend Jenny to other people?

January 2016

Comments

Yes

They are caring and supportive. They provide helpful information to the family.

Yes

Yes, as per previous comments

Yes

A brain injury is a life changing event and you need as many supportive, knowledgeable people like Jenny working with you. Jenny made my fears melt away and mended quickly and confidently. I really looked forward to our meetings and calls.

Yes

For support to relieve stress and anxiety

Yes

To have someone to talk to

Yes

In our situation, things happened rapidly. Having someone to explain what is happening and answer questions was a godsend.

Yes

Someone to talk to

Yes

You don’t know what is available for you to access

Yes

Help you to understand better and actually good to talk to someone

Yes

Knowledge is power

Yes

There is no other source of information. Her obvious compassion was a comfort

Yes

Ongoing support after initial contact

Have you maintained contact after discharge? Yes

Comments Jenny invited us to a morning tea in the Botanical Gardens for neuro patients and families (was at home in NW so couldn’t attend).

No No

Rang landline, left message. Would like to have been contacted after discharge.

No No

Returned to Queensland and home

No No

Just too busy

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Acquired Brain Disorder Community Liaison Officer Project - Interim Report Have you maintained contact after discharge?

January 2016

Comments

No Yes

Jenny called me weekly to check and reassure me of my progress. I always felt like I was beating it with Jenny’s support.

Yes Yes No

Was phone contact to see how Don was going Misplaced her contact details and could not remember who or where she was from.

Yes Yes No No Yes Yes

But kept missing her calls It’s good to have consistency amid every changing team of medicos

Yes

Not a great deal, but I would have more if needed.

Don’t lose a valuable professional like Jenny Langley. It would be to the neuro team’s detriment. The surgeons worked a miracle with me; but Jenny maintained my psychological health.

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Brain Injury Association of Tasmania

Acquired Brain Disorder Community Liaison Officer Project Interim Report (January 2016)

(03) 6230 9800 www.biat.org.au enquiries@biat.org.au 83 Melville Street Hobart, TAS 7000

ABI Community Liaison Officer - Interim Report  

The role of the Community Liaison Officer is to provide support to family and carers who have loved ones with acquired brain disorders (ABD)...

ABI Community Liaison Officer - Interim Report  

The role of the Community Liaison Officer is to provide support to family and carers who have loved ones with acquired brain disorders (ABD)...

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