Supporting individuals with traumatic brain injury

A severe traumatic brain injury (TBI) alters the ability to communicate decisions and choices to others clearly, affecting the wellbeing of an individual. It is important to understand the experiences of young people making decisions after injury, in order to determine the best strategies for decision-making participation.

Supporting the decision-making process for young people with a disability helps to ensure this group of people can participate in their community and every day activities, offering a better quality of life.

We asked some of those who will be speaking at the 2nd Annual Younger People with Very High and Complex Care Needs Conference on the 17-18 June to provide an insight into the work that is being done to ensure this group has greater choice and control in terms of their support options.

In this piece, we thank Lucy Knox, Speech Pathologist/ PhD Candidate, Human Communication Sciences, La Trobe University for taking the time to share her thoughts on the issue with us.

Why is it important to support the decision making process for a young person with severe traumatic brain injury (TBI)?
It is clear from existing research that decision-making participation is linked to quality of life and psychological wellbeing. What we have also seen over recent years, both internationally and locally, is an increasing emphasis on the right of individuals with disabilities to make decisions about their lives. These changes can be seen across social, legislative and practice levels. There have been many drivers for these changes, but one is the United Nations Convention on the Rights of Persons with Disabilities (to which Australia is a signatory), which obligates us to ensure that individuals with a disability are provided with the support and accommodations they require to enable them to participate in making decisions about their lives as fully as possible.

How does your research contribute to knowledge in the area?
In my research, I am particularly interested in exploring the experiences of people with severe TBI and those around them who support them with decision making after injury. Although we now have a considerable body of research documenting changes in decision making skills following brain injury, we still know very little about the experience of individuals with TBI and those around them in negotiating the process of making decisions after injury. I was motivated to undertake this research by my experience working with people with brain injuries in both policy and practice roles, and a desire to ensure that the support and services we provide reflect the needs and preferences of the individuals who are living with brain injury.

Without giving too much away, can you provide an insight into some of the challenges that are faced by individuals with TBI and their supporters, when making decisions?
There are a broad range of factors that seem to influence the decision-making processes for adults with severe TBI. Some of these factors relate to the injury itself, in particular, changes in cognitive functioning that impact on the ability of individuals with severe TBI to make decisions after injury, and the changed nature of relationships that follow severe injury. Challenges are varied and highly individual, but can include the presence or absence of support, the values and attitudes of supporters, and the availability of resources at the right time.

You’re speaking at IIR’s 2nd Annual Younger People with very high and complex care needs Conference, taking place on the 17-18 June 2013 in Melbourne. What aspects of the conference are you most looking forward to?
In many ways, it is an exciting time in the disability sector. I am looking forward to hearing about a range of innovative projects and new approaches to service delivery, and am particularly pleased to see a number of presentations from service users and their family members.

To hear more from Lucy Knox, catch her in action at the upcoming 2nd Annual Younger People with Very High and Complex Care Needs Conference on the 17-18 June in Melbourne.

Supporting the decision making process for people with intellectual disability

The needs of young people with very high and complex care needs have been identified as a priority group for the National Disability Insurance Scheme (NDIS), with recent legislation being passed to ensure people have a greater level of care and support.

To maximise the potential benefit of forthcoming funds, it’s essential to fully understand the needs and complexity of providing support for this group by drawing on key learnings from projects across the nation.

We asked some of those who will be speaking at the 2nd Annual Younger People with Very High and Complex Care Needs Conference on the 17-18 June to provide an insight into the work that is being done to ensure this group has greater choice and control in terms of their support options.

Joanne Watson, Research Fellow and Speech Pathologist of Scope

In this piece, we thank Joanne Watson, Research Fellow and Speech Pathologist of Scope, for taking the time to share her thoughts on the issue with us.

How important is it to support the decision making process for a young person with a severe/profound intellectual disability, deciding where they would like to live in the future?
Today in Australia and in most of the western world, concepts related to self-determination such as freedom, choice, individualism and autonomy are embraced and celebrated. The making of decisions is ubiquitous to everyday life. Most Australians lead lives that bring with them an ever-expanding smorgasbord of options. What clothes to wear? Who to spend time with? Whether to pray and to whom? One of the most important decisions we make as human beings is regarding where we ‘lay our hat’, ‘where we call home’.

However, there is a growing concern that in a time when most Australians have more opportunities to control their lives than ever before, people with severe/profound intellectual disabilities, are not being invited to the party (Watson, n.d.). This is the case despite a global movement towards disability policy strongly committed to self-determination. The United Nations adoption and Australia’s ratification of the Convention on the Rights of Persons with Disabilities and Victoria’s introduction of the Victorian Charter of Human Rights and Responsibilities clearly articulates the rights of all people to lead self determined lives. An important element of this self-determination is having genuine choice as to where to live, how and with whom. Article 19a of the UN Convention on the Rights of Persons with Disabilities (United Nations 2006) states: ‘Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement’.

The challenge of degenerative disability: Huntington’s Disease

Younger people with very high and complex care needs are people under the age of 60/65 who require a high level of care and support due to disability. Examples of disabilities affecting this group include: Acquired Brain Injuries (ABI), Multiple Sclerosis and Huntington’s Disease and other neurodegenerative diseases. People  with these disabilities are at risk of being admitted to residential aged care (RAC) because of the sudden nature of their disabilities – acquired injuries can occur to an otherwise healthy person through, for example, a car crash or accident, and MS and Huntington’s Disease often have rapid onset.

As at June 2012, 3300 people under the age of 60 lived in nursing homes. These facilities are not designed or resourced to provide young people with support to continue to participate in their community and everyday activities.

The excerpt below is taken from Janet Wagland‘s paper that accompanied her presentation at the Younger People with very High & Complex Care Needs Conference in 2012. Janet is the Manager Services for Younger People at Brightwater Care Group.

Background to Huntington’s Disease
Huntington’s Disease (HD) is an hereditary disorder of the central nervous system. While best recognised for its physical presentation such as uncontrolled muscle movements, impaired swallow and limitations to mobility, it also causes a range of neurological symptoms including cognitive and perceptual deficits. The complex presentation of the disease, combined with an average age of onset between 30-50 years old, means that Huntington’s Disease has a major emotional, social and economic impact on the lives of both the person with HD and their families.

Early presenting symptoms may include some uncontrolled movements and clumsiness but often the symptoms that impact most in the home environment are changes in mood, temper outbursts and changes to regulation of self care and lifestyle management. These issues can cause breakdowns in relationships with immediate family, friends, neighbours, employers, workmates and the larger community.

Whilst people at mid stage of the disease progression do present with mobility and movement control issues, it is often deterioration in their ability to plan and manage their life that causes them to lose independence. Presenting issues may include poor hygiene, lack of financial management skills, the inability to manage personal health including medication management and dental health, a loss of personal relationships and poor dietary control. These can result in the individual being inappropriately accommodated in the public health or mental health system, a nursing home for the aged or a high care environment in the disability sector. Some individuals may be homeless.

People with Huntington’s Disease often present with some or all of the following during the progression of the disease:

•  Physical Symptoms
  - Jerking movements (choreiform) of all limbs, the trunk and face
  - Lurching and stumbling gait
  - Slurred speech
  - Weight loss
  - Swallowing difficulties resulting in aspiration or choking

• Cognitive Symptoms
  - Impaired planning, organising and sequencing
  - Slowed thought processing and reasoning
  - Lack of initiation
  - Rigidity of thought
  - Difficulties with impulse control
  - Poor awareness of time
  - Reduced awareness and concentration

• Perceptual Symptoms
  - Impaired spatial perception
  - Difficulties managing and manipulating personal space

• Emotional Symptoms
  - Physical and verbal anger outbursts
  - Antisocial behaviour
  - Depression
  - Apathy
  - Reduced awareness of behavioural impact on others

Due to the diversity of symptoms and the whole-of-life impact that these symptoms have, people with HD require services and support from a wide array of health professionals including neurologists, psychiatrists, psychologists, social workers, physiotherapists, occupational therapists, speech pathologists, dieticians and nurses. In addition, they also need support from a diverse group of service providers ranging from genetic services to family planning, advocacy, support groups, accommodation and mental health agencies.
You can download the rest of the paper here. You can also download her accompanying presentation slides here.

Janet will speak at the 2nd Annual Younger People with very High and Complex Care Needs Conference in Melbourne on 17th and 18th June 2013.

What are the top strategies for improving NEAT performance?

Image credit: http://durhamregionalhospital.files.wordpress.com

Patients experience delays in emergency departments for a variety of reasons and delays are often associated with patient flow blockages that occur within the broader hospital system. Combatting emergency department overcrowding and access block require a whole-of-hospital approach and thus meeting the 4-hour National Emergency Access Target (‘NEAT’) can present a multiplicity of challenges across departments. We had a chance to speak to some of the guest speakers for the 5th Annual Emergency Department Management Conference to get their views on challenges and strategies for improving NEAT performance.

What are the key challenges for your hospital in meeting the National Emergency Access Targets and what are your top 3 strategies for improving NEAT performance?

Engaging & communicating with frontline staff, given the rapid pace of change & large number of shift workers
• Decide whether achieving NEAT or improving patient flow is your key aim; they have overlap, but are very different goals.
• Know & monitor the rate limiting steps for patient flow in your own hospital; don’t blindly copy other hospitals’ ideas.
• Keep asking the frontline staff to think of improvements, sieve & prioritise them, then have strong executive support to run trials with good data collection.
Dr Simon Bugden, Emergency Physician, Caboolture Hospital, QLD

The greatest challenge is creating a culture where by the patient is considered first. The problem with targets is that staff don’t believe in a target but at the same time forget that target actually represents better care. Less time spent in ED is good for the patient; maybe the target should have been length of stay in ED rather than the percentage through in 4 hours. People change, getting staff to change the way they think and act about patient flow is the greatest challenge.

We have to better understand capacity management and patient flow. Demand is predictable and capacity is manageable. A stronger knowledge base about capacity and demand for both the ED and inpatients is imperative to creating solutions that actually solve the problem. Clinical redesign is a key focus for us. We need to empower staff to change the way they work that results in putting the patient first. Finally, reducing time in ED and time in inpatient beds by reducing waste and delays, this not only includes reducing external delays i.e. disability patients and access to residential care facilities but internal delays such as access to diagnostics, transport, specialist consultation and the list goes on.
Dr Kathryn Zeitz, Director Improvement, Central Adelaide Local Health Network, SA

Key Challenges:
1. Managing the increasing demand with reduction in resources and funding. The growth in demand for health services is disproportionate to population growth.
2. The mismatch between ED activity and the available bed stock and secondary services, requiring a large proportion of transfers.
3. Availability of “exit” options for patients who are elderly, have chronic comorbidities and long term age related mental issues.
Key Strategies:
1. Maximising ED throughput for discharged patients (80%) by innovative models of care, early senior led decision making and patient streaming.
2. Use of direct admissions to inpatient beds
3. Reorganisation of medical units and registrar rostering.
Dr. Chris May, Director of Emergency department, Redlands Hospital

Electronic medication management systems and its challenges

We had the opportunity to pick the brains of Megan Zigomanis, Lead Pharmacist, ehCare@eastern, Eastern Health, in the lead up to the upcoming 2nd Annual Electronic Medication Management Conference in Melbourne.

What have been the biggest challenges and successes in implementing electronic medication management systems at Eastern Health?
a. The biggest success will be standardisation across disparate organisations and the driver for policy change.
b. The biggest challenges are
i. Translating theory into practice and communicating to senior management the magnitude of the change.
ii. The standardisation and communication of existing organisational policy.
iii. Communicating to the organisation the magnitude of the effort to maintain, develop and monitor the newly implemented systems

One of the key topics addressed on the Electronic Medication Management conference agenda is the issue of planning and organisational management when implementing systems, what are your 3 top tips for coordinating as smooth a roll out as possible?
a. Planning and gaining a detailed understanding of the environment you are implementing to e.g. current workflows and practices
b. Gaining the trust of all stakeholders and stakeholder groups
c. Communicating clearly and concisely

As we see more research and evaluation data around the effectiveness of eMM systems, where do you think the future lies and what is the biggest innovation you would like to see?
a. Improved information sharing across different clinical/departmental systems enabling more detailed patient outcome based information.

Please visit the official conference website if you’d like more information on the conference.

Managing the emergency department

Photo credit: http://www.medicalobserver.com.au

The processes that take place in the Emergency Department are critical for any hospital. Reducing wait times and creating a positive experience are important indexes of patient satisfaction. Inefficient methods can result in lost revenues and poor community image, as well as concern over patient safety. The Emergency Department (ED) is often a patient’s first experience with the hospital, thus refining the ED’s efficiencies is vital to both customer satisfaction and the overall hospital business care.

4-hour rule.

Improving patient flow and reducing access block and waiting times, while simultaneously enhancing patient and staff satisfaction are challenges that all emergency departments aim to combat. While having clearly defined boundaries in one sense, the emergency department also involves a number of other hospital departments thus cross-functional management is a crucial element of any major change initiative involving the emergency department. The perennial challenge of creating efficient patient transfer from the Ed to other inpatient wards will be touched on, as will managing the change processes in implementing projects across the board.

The 5th Annual Emergency Department Management Conference will be looking at revising and strengthening models of care, supporting IT structures, funding in the ED, hospital avoidance strategies and staff training and retention in light of change management.

If you’d like more information on the event, please visit the website here.

Acute care and the uncomfortable detour on the dementia pathway

We had the opportunity to pick the brains of Dr Mark Yates, Geriatrician, Director of Clinical Studies Ballarat Clinical School, Deakin University; Associate Professor, Medicine, Deakin University prior to the upcoming 4th Annual National Dementia Congress in Melbourne in February 2013.

What do you see as the main challenges and opportunities of dementia being designated a national health priority? In what ways will this change dementia care?
Opportunities – National ownership of the difficulties faced by people with dementia and their families. Until Dementia became a NHPA there was no unified approach – other chronic disease like diabetes, COAD, OA all had a common medical driving force that put them ahead now governments must show leadership and the various health professional groups will have a common purpose. The challenge will be to get agencies to realize the challenges are not insurmountable and addressing them now is only just soon enough.

What are some of the most exciting research or technological developments in the field at the moment?
Pharmacotherapy has not been the breakthrough we had hoped for. The new discovery is the ability to accurately measure the volume of Amyloid in brains and the challenging realization that this protein thought to be a key cause of AD is accumulating 15-20 years before symptoms present. We ( Geriatricians) may the modern day equivalent of the Victorian era renal physician who diagnosed renal failure by taste and smell just a year or so before death when the kidney had been failing for years beforehand. It is exciting to think that if we were to introduce new treatments to patients with confirmed amyloid accumulation in the pre-symptomatic phase we may be able to delay the conversion to symptomatic AD.

Why is it important for hospitals to provide dementia-specific care to people with dementia?
Dementia and Delirium ( I will call this Cognitive Impairment or CI) is common in hospitals occurring in about 20-30% of inpatients over 65 who occupy over 40% of multiday beds. CI is associated with increased hospital adverse outcomes such as falls. CI like visual and hearing impairment has no visual stigmata to alert staff to provide the additional support required and so care can be compromised. For vision and hearing we have addressed this in hospitals by asking patients about their impairments and providing over bed alerts when significant disability is present. Only a minority of hospitals routinely measure cognitive function (which at most takes 6 minutes) so the disability is missed and even if the staff are alerted by family or the presence of obvious impairment there is no hospital process that ensures all staff both clinical and non-clinical can provide the appropriate re-orientation and communication that can make the hospital experience less anxiety provoking and safer.

It should also be recalled that dementia, like most chronic disease, is rarely the reason for the admission and so is often ignored it the haste to treat the admission problem. It is also known the dementia is a risk factor for delirium which is known to be associated with increased in-hospital death and delirium can be avoided.

What are some of the ways that this can be achieved?
To improve care for people with CI in the acute setting all hospitals:
• should screen for CI in the patient group over 65 and when this is identified have clear hospital process to ensure
- that all staff are aware of the CI and know how to communicate appropriately – the cleaning staff, catering and porters must be included
- that carers are involved and invited to participate in the care team – the key family member is often the cognitive anchor who can provide security to an anxious dis-oriented patient

• should apply the National Quality and Safety Standards from the perspective of the person with CI – how do you avoid medication error or falls in a person with memory impairment if you do not know their memory is poor. The ACHS or equivalent should ensure the appropriate measures are in place as are now in place for appropriate screening for diabetes.

• should introduce nursing leadership roles in dementia/delirium(such as a CNC Cognition) to provide ongoing education and behavioral modeling to in the rapidly changing health workforce to ensure sustainability of any care program. The in-hospital prevalence of Diabetes is 11% and appropriately care is supported by Specialist Diabetic Nurses.

• should be provided with adequate funding to meet the challenge of care for cognitive disability as they are to meet the needs of those with physical disability. This should be a focus of the new National Independent Pricing Authority as current DRG funding does not build in these costs appropriately.

Can you briefly explain what you’ll be presenting at the upcoming Dementia Congress?
In addition to the above I will be presenting data demonstrating that care for people with CI in hospitals can be improved as shown by the Dementia Care in Hospitals Program which has been introduced into 22 hospitals in Victoria and is being re-evaluated in the private sector with the support of a BUPA Foundation Grant. The DCHP is an education and culture change program that aims to improve awareness of and communication with people with CI linked to a unique abstract graphic that is used as an over bedside alert. This program was developed at Ballarat Health Service in conjunction with AAV and people with dementia and their families.

Acute Hospitals know how to support people who are easily frightened and confused in the ward setting and they make sure the family is present to reassure and support care- they do it in pediatrics everyday and pediatric hospitals have unique additional funding to achieve this. We just need to understand a person with dementia will find the hospital environment equally frightening and confusing and meet their needs with the same empathy.

If you’d like more information on the Congress, please visit the official website here.