Welcome to the round up of 2011 Stroke Foundation blog. I would like to begin with a thank you for your generous support of the Stroke Foundation. Without your help, we could not provide vital services to the many people affected by stroke every year.

In 2011 our team has been involved in many new initiatives for stroke and has also been finalising a number of projects that have been in development. Some new projects include a comprehensive consumer resource – My Stroke Journey to be distributed to people when they have their stroke – which we expect to be rolled out in 2012. This initiative will serve as a roadmap of available services and a guide to the complex path to recovery many stroke survivors will tread. Developed out of a clear need expressed by the stroke community – survivors, families and carers - the kit will complement StrokeLine, which is an important freecall service where any individual can speak to an NSF health professional for advice and support about stroke.

A comprehensive survey of the needs of stroke survivors, families and carers is also being undertaken. This important work reflects our commitment to supporting every individual touched by stroke from their hospital admission to rehabilitation and their return home. This research project will survey 1,000 stroke survivors and carers using methodology already endorsed and tested by the UK Stroke Association, to estimate the long-term unmet need for stroke care in Australia. A survey of this scope has not previously been conducted here and we are grateful to The Trust Company and Collier Charitable Foundation for their generous support in funding this important piece of work.

We have just launched a successful audit of acute stroke services in Australian hospitals. A detailed and exhaustive process that is drawn from feedback from participating hospitals in Australia who see more than 100 cases of stroke every year. From this survey we can provide a snapshot of the strengths and weaknesses of the system as it pertains to stroke. The final document, which we revisit every two years, is used to measure progress in acute stroke services and is a guide to where improvements need to be made. While there have been some improvements, Australian hospitals are still lacking an adequate number of stroke units where we know if stroke patients are admitted in the first instance they are most likely to recover and have the best chance of returning to an independent life.

We have also enjoyed wonderful support from the community in some of the new fundraising events we have initiated. A highlight of our fundraising this year is Food for Thought. Held this year in Melbourne, Sydney and Hobart, the event brings together elite chefs who kindly donate their time, skill and produce to provide an evening of fine food and entertainment while drawing attention to the seriousness of stroke. Life-sized photographic portraits of stroke survivors remind guests and sponsors of why they have been brought together. Some images from the 2011 program are included here for your interest as well as 2012 program dates. Please consider supporting one of these beautiful evenings next year. Other fundraising initiatives include this year’s inaugural Walk for Stroke, where a group of supporters walked the stunning Great Ocean Rd to raise money for NSF. Our thanks and appreciation for such a great achievement. Support continues from our very loyal community and we are extremely grateful to the donors, volunteers, foundations, companies and private benefactors who generously contribute to our cause.

Our mission remains to stop stroke, save lives and end suffering. With your continued help we work towards realising this goal every year. In the meantime we are able to provide better support for the stroke community and can continue to lobby the Governments of Australia for better services for stroke - at every stage of the journey – for survivors, their family and friends. Thank you. Every dollar we raise makes a difference and we cannot achieve our mission without you.

As always, please don’t hesitate to contact us if you have any questions or comments about our work and we hope you have a safe and healthy summer.

Merry Christmas,

Erin Lalor

Note: More about the stroke survivor and carer survey.

Have you had a stroke? Are you a carer of someone who has had a stroke?

The National Stroke Foundation is conducting a national survey of stroke survivors and carers of stroke survivors. We need your help to find out what stroke support or services are currently needed in Australia. This information will help to inform strategy and advocacy work of the National Stroke Foundation.

Please click here to download a patient information sheet for you and your carer to read, so that you can decide if one or both of you wish to complete the survey. It contains detailed information about the project and clearly explains all of the processes involved.

To participate please click here and complete the online survey or call 1800 STROKE (1800 787 653) to complete the survey over the telephone

If you prefer to be contacted by post please email survey@strokefoundation.com.au with your postal address to receive a survey in the mail.

There are many adjustments that need to be made to life after stroke and not all of them by the person who has had the stroke. Stroke happens in an instant – and so too, does becoming a stroke carer. Taking on the role of carer can bring with it a great many emotional, time and financial pressures. Sometimes the end of the year – with holidays, parties and family visiting – can add to carer stress. We’d like to remind carers to take some time out for themselves and to ask for support when things are feeling too difficult.

Vivienne Harkness understands the jolt to reality that comes with a new life as a carer. When her husband, Peter Harkness, suffered a severe stroke at 7.01pm on May 30 this year Peter, Vivienne and their family began a journey that continues today.

“The stroke was hard on Peter and continues to be very difficult,” Vivienne says.

“But as carer I have experienced some changes to my life that I could never have anticipated.”

As her own means of coping as well as handling the dozens of phone calls she would have to make at this stressful time, Vivienne wrote an email to all friends and family letting them know what had happened. For the next few months Vivienne kept up her correspondence as Peter went through rehabilitation and finally came home. It was a very practical form of therapy, she says.

Vivienne’s first-hand experience of life as a carer gave her a close-up glimpse of the day-to-day challenges of life after stroke.

“Carers need a great deal of support,” Vivienne says. “It is a taxing job and one that you are not prepared for as you can never prepare for stroke.”

“You can’t understand the life of a stroke carer until you become one,” she says.

Here are some general tips for looking after yourself so you have enough energy to care for someone else:

No one plans on becoming a carer. If you are a carer it is important that you don’t feel alone – especially if you don’t have family members to give help and support.
Although there will be changes in your life it is important to remember your own needs. You should continue to do the things that you did before your life was affected by stroke, making sure to keep the person who has had the stroke involved in, or at least aware of what is happening.
Carers often manage the health care and medications of the person they care for. You may also have a lot to do with health care professionals as part of your caring role. Think of yourself as being part of the team working with the stroke survivor to make the best recovery possible.
Do not be afraid to ask your general practitioner or your stroke team for guidance and support. There is also a list of carer support agencies at Strokefoundation.com.au

Adrian had a stroke in his mid-30’s, ten weeks before the birth of his daughter. Since then Adrian has made a remarkable recovery, including trekking through Tasmania with his best mate, to raise money for the Stroke Foundation. Recently Adrian has gone on the journey of advocating for himself and other survivors with local and state government authorities in NSW. He shared his story with us, so we will share it with you.

To keep it real we have permission to share with you Adrian’s emails and letters. Thanks Adrian (Stroke Foundation Consumer Council Member).

What is the issue and who you are taking on?

In NSW there is a travel pass called a Vision Impaired Person Pass that entitles you to free Bus/Rail/Ferry travel administered by Passes and Concessions at Cityrail. Given that my vision problems prevent me from driving, I thought I’d get one. It would save me $48 a week.

I rang up and asked to be sent an application. Upon reading it I knew there was no point applying as I wasn’t eligible because of the criteria they use. The criteria are about visual acuity on the Snellens scale, i.e. how well you see - 6/6 etc, or field loss (beautiful language this) in the better of the two eyes. I don’t have a better and worse eye. Both eyes are affected equally. I rang the office and explained this to the man that I can’t apply because I don’t meet the criteria; I likened it to having a cancer patients pass where you offer the pass for some types of cancer but not others. He charmingly said, “We don’t make the criteria, you’ll have to talk to the Ministry.” He got my back up. So I did.

What I was taking on was getting the criteria changed to make them more equitable. Ultimately I was taking on the Minister of Transport.

What are you hoping to achieve?

After thinking about it, the best outcome as I could see it, no pun intended, was to remove all the vision stuff from the application process completely. This was a pretty radical idea and where I ran in to problems, advocating for the introduction of a vision pass where you remove the vision stuff in the application. Instead I wanted the application process to look at a person’s ability, or lack thereof, to hold a driver’s licence as the determinant in eligibility for a pass. If the applicant can no longer hold a licence they’ve obviously suffered significant vision loss, regardless of the type, and are going to be reliant on public transport. It simplifies the process for everyone.

In its current format I have to go to an ophthalmologist or optometrist, at some cost, to fill out the form for me then they have to review said results. Or my alternative, have one part of the Department of Transport, Cityrail, ring another part, the Roads and Traffic Authority and ask “does Joe Bloggs have a licence? No? Thanks.” Joe Bloggs gets pass.

Why you think it is important?

Personal interest says I can save almost $2500 a year but am not eligible. That was one motivator. Stroke affects my earning capacity, costs me money every year in drugs, doctors, special gloves I need, orthotics and more. Here was an opportunity to have a win for a change.

I wanted to make it easier for the next person who runs into this problem. The next person may not be as tenacious as me and just give up because it is too hard. I don’t want them to miss out.

What is the process you experienced?

First, determine what you want. Have a plan. Have a devil’s advocate friend you can bounce ideas off, vent etc. First step I talked to people including the NSF, Disability Legal Advisory Centre, Vision Australia and the NSW Anti-Discrimination Board to determine if I indeed had a fight worth fighting. All had solid advice, the Disability Legal Centre were especially interested in taking on this cause. Ultimately I didn’t want professionals involved because I felt I could do a better job of advocacy and I had a better approach. Better than the professionals, I believe, because I was personally involved. But I was a total amateur.

Line up your ducks and always take a reasonable approach. Be a nice person to deal with even if the person you are dealing with isn’t, don’t get emotional - it’s a waste of energy and it doesn’t help as this process isn’t about you. Be consistent. I always asked for the same result, nothing more or less. If anything I was being too nice. Keep a big stick handy, I mentioned that I’d spoken to the Anti-Discrimination Board but that wasn’t the approach I wanted to take. I looked at it as a bit of intellectual sport and fun, seriously, but also I wouldn’t have picked the fight if I didn’t think I could win.

Here is a summary of the process I followed: ring Minister’s office and explain situation. No joy. Contact local member - provide info, provide more info. They contact Minister on my behalf. Wait. Wait more. After four months ring up Minister’s office and give friendly prod. After five months get ineffectual response via local member. Ring up Minister’s office and ask to speak to either the person who wrote the useless response or the Minister. Told I am not able to. Fume a bit. Get a bit cross. Move on to the person who is likely to be Minister after election on March 26. When she is Minister get in contact again. Receive another not-great response from new Minister. Received contact from the office that administers said pass, told that they can, in fact, make exceptions to criteria if you don’t meet them. Tell them if I was told this in the first place, instead of “you’ll have to contact ministry” all of this could have been avoided. “Oops, sorry Mr. O’Malley.” Go back to local member explain where we are at. Asked to send email outlining what I’d like as she proposes tabling it as private member’s bill. Good result. Wait about seven weeks.

Receive a phone call to be told it will be tabled. Get ready to put on suit and go to Parliament house.

From initial contact to this point has been about 15 months. I haven’t rushed. I sat on things and ruminated at times. Haven’t included here all the phone calls made, probably have spent more than four hours on the phone and have made at least 20 calls.

Where you are now in the process?

I am awaiting notification that I can put on suit, go to Parliament house and get to watch democratic process in action. I stopped cutting off my nose to spite my face and accepted the offer of the pass.

What you have learned?

That I’m tenacious, well actually nine weeks in hospital and seven months of rehab taught me that but discovering that the tenacity is applicable in many areas is something I have really enjoyed. That I’ve done a good job and that I am looking forward to the next fight/bit of intellectual sport and the one after that. And so on. Being a reasonable nice guy with a consistent approach works because it gets people on your side/doesn’t give them the shits and will actually deal with you.

What’s the next step for you?

Next steps remain to be seen. If the private members bill fails, if MPs are brave enough/such complete bastards/stupid enough to vote down something that would make things fairer for disabled people, I’ll switch to sneaky/nasty Ade and use the big sticks I talked about. It pays to think at the beginning of the process that you may need them some way down the track and I’ve always been prepared for this eventuality. Use them only when you’ve exhausted all other avenues. I’ll contact shock jocks and papers with the flow of nice emails, that’s why I’m always nice, and the ineffectual replies I received, the fobbing off and then implement the “I’m just a poor disabled guy trying to make things better/fairer for everyone because it isn’t fair, I tells ya,” line.

Before I did that though I’d contact the Minister’s office - because I’m a nice guy and we may cross paths again - thank her for my pass, and ask for a meeting to see if we can discuss the issues I raised that she ignored earlier and perhaps mention my intention to start using said big sticks.

If all that fails I’ll also launch a case with the NSW Anti-Discrimination Board but let the rabid dogs off the leash for that one and let them take over because by that point I reckon I’ll have had enough. If all that doesn’t achieve the change that I set out to achieve I’ll still have saved myself $2500 a year for the rest of my life and be comfortable in the knowledge that while I may have ultimately failed I had a red hot go in making it easier for the next person who “doesn’t meet the criteria.” Not a bad result really.

There you go. Bear in mind I’m nowhere near a professional but I was smart. In future I’ll always take the same approach. If I’m doing it because I’m angry I’ll do it wrong. If you look at the tone I used I wasn’t pleading at any point, I just tried to be articulate and offer a reasonable solution and everyone I spoke to agreed. I harp on about reasonableness but it works. I’ll start charging for my advice I reckon!

Image Via: Clker.com

Callers to StrokeLine 1800 STROKE (1800 787 653) often call after having trouble getting travel insurance after a stroke or TIA. With holidays upon us, it is a good time to see what travel insurance policies and avenues are best for you.

Travel Insurers assess all applications for pre-existing medical conditions on an individual case by case basis. There is no book with set responses that they will give. In reaching a decision whether to provide cover for someone with pre existing medical condition, insurance agencies take into account; age of the traveler, where they are going, the amount of time away and the stage of the condition.

John Berrill from Maurice Blackburn Reviews, has written a great article about buying travel insurance if you have a pre-existing chronic illness, Travel Insurance & Chronic Illness .

For a list of government and community suggestions, please see the links below.

Council of the Aging (COTA) has recommended these travel insurance companies, especially for the over 60’s:

Australian Seniors Insurance Ph: 1800 024 848 Web: Seniors.com.au

COTA Insurance Ph: 1300 1300 50 Web: Cota.com.au

Australian Pensioners Insurance Agency Ph: 13 50 50 Web: Apia.com.au

Stroke survivors have reported positive outcomes using:

Covermore Ph: 1300 72 88 22 Web: Covermore.com.au

Note: the National Stroke Foundation has no relationship with Maurice Blackburn Lawyers.

Patrick Groot from Warrnambool in Victoria has won the NSF Stroke Care Champion Award for his dedicated work with stroke survivors and stroke clinicians since 2004. Patrick, a registered nurse, works as stroke liaison and clinical nurse consultant with South West Healthcare in Warrnambool and is also Regional Stroke Coordinator with the Victorian Stroke Clinical Network.

As part of his role as a clinical nurse specialising in stroke, Patrick sees all stroke and min-stroke admissions at Warrnambool Base Hospital, part of Southwest Health Care. He works with survivors, carers and families across the entire stroke care continuum, ensuring seamless transition from hospital to rehabilitation and then home. The region he works in sees on average 110 stroke patients and 50 mini-stroke patients a year.

He is also a leading community educator, running programs to raise public awareness of stroke.

Patrick said he enjoyed working in the area of stroke because of the many opportunities it presented where he could to improve the lives of people affected by the condition.

“I have found that with stroke you have a wonderful opportunity to make a difference to people’s lives,” he said.

“There is a lot you can achieve and I like striving towards the goal of better services.”

Patrick will this year complete his Masters in Health Science, Stroke Specialisation as part of his continuing education in the area of stroke.

His nominator wrote:

“Patrick has worked tirelessly in the southwest region of Victoria improving the lives of stroke survivors and the skills and knowledge of regional clinicians. He has been instrumental in the development of the Southwest Health care stroke unit and thrombolysis service … resulting in being one of the first regional areas in Victoria to have access to these facilities.”

This award is conferred jointly with the Stroke Society of Australia.

Only seven per cent of Australian stroke patients eligible for life-saving treatment received it in 2010, a new report on acute stroke care services has revealed.

The National Stroke Foundation Acute Services Clinical Audit, which provides a snapshot of acute stroke care in Australia, also shows that patients who do not get access to a hospital with a stroke unit are far less likely to receive an appropriate level of care and treatment, increasing their chances of death and severe disability.

Launching the report in Melbourne today National Stroke Foundation CEO Dr Erin Lalor said one of the reasons for the low incidence of stroke patients receiving clotbusting drugs in Australia was delay in getting to an appropriate hospital.

The clotbusting treatment, known as thrombolysis, must be administered within a few short hours of the onset of stroke symptoms and only one in three people experiencing symptoms of stroke arrived within three hours.

“This report confirms the importance of getting in an ambulance and to a hospital with a stroke unit at the first sign of stroke,” Dr Lalor said.

“Stroke patients who are not treated at a hospital with a stroke unit are less likely to receive the standard of care recommended in the clinical guidelines for stroke and therefore more likely to suffer permanent disability,” Dr Lalor said.

“Once a stroke occurs it is vital that patients get to a hospital and receive treatment immediately,” Dr Lalor said.

“It is imperative that everyone can recognise the signs of stroke so immediate action can be taken to save lives and reduce disability.”

The Acute Services Clinical Audit examined the treatment of over 3000 people with acute stroke during 2010.
Stroke is Australia’s second leading cause of death and a major cause of adult disability. A stroke occurs in Australia every 10 minutes.

But Dr Lalor said stroke was not only preventable but treatable if prompt specialist medical care was given. The National Stroke Foundation promotes the FAST message as a way of identifying the earliest signs of stroke.

FAST stands for Face – Has the person’s mouth drooped? Arms – Can they raise both arms? Speech – Is their speech slurred? Can they understand you? And Time – if any of these symptoms are present call an ambulance (000) immediately.

Dr Lalor said the FAST campaign was known to improve awareness of the onset of stroke and has increased calls to ambulances. She said the FAST message needed improved funding so it could be rolled out in community awareness programs in all states.

“The treatment of stroke patients remains inadequate, with processes known to save lives from death and disability not used in enough cases.”

The audit found although there were improvements in various processes of care since 2007, many gaps remained.

“Right now in Australia people who have a stroke do not have any guarantee that they will be able to receive the level of care that is available, and that should be available, to every individual,” Dr Lalor said.

The National Stroke Foundation says the most significant shortfalls in Australian strokeservices include:

Only seven per cent of patients with ischaemic stroke were thrombolysed with the clot busting drug tissue plasminogen activator (rtPA). When successful in clearing the blood clot, this treatment is known to increase the chance of a better outcome following stroke by 30 per cent.

Too few people with stroke are arriving at hospital quickly - prompt assessment and treatment on a stroke unit in hospital saves lives – better funding is needed for broad community awareness campaigns.

People who do not make it to a stroke unit are less likely to get appropriate care and are more likely to suffer permanent disability than stroke patients treated on a stroke unit.

“The audit shows there is an urgent need for federal and state governments to devote greater resources to stroke care to reduce the impact of Australia’s second biggest killer,” said Dr Lalor.

Download Audit Report 2011

Image via benditlikepretcell.blogspot.com

I’ve had a few falls, usually doing something risky with my balance and/or seriously overestimating my ability. This is silly as I know I have balance issues.

At first it was just getting used to my disability, getting to know my weak spots. Just one example is tent flaps! I used to trip over them before the stroke but could correct myself and usually stumble, not fall. But after the stroke I was literally falling flat on my face. The causes are many and varied: tent flaps, carrying too heavy a load, too much chardonnay, getting too tired, kids (wonderful though unpredictable in their enthusiasm), bi or multifocal glasses or just not looking!

I am still surprised every time I feel myself falling toward the earth, anticipating the inevitable pain and wondering at my own misfortune. There isn’t a way a middle-aged mother can fall elegantly. It’s embarrassing; horrible when you know you’ve done a serious injury and quite worrying for the future.

Falls are associated with morbidity and mortality rates, especially as you get older, so it’s very important to do everything you can to avoid them.

To get in early, I have started doing Tai Chi as my GP told me that it has been proven to help in falls prevention. I am kind of fit but despite that I found Tai Chi quite demanding. It certainly challenged my balance and therein lays the point - balance!

When I asked at my Stroke Association lunch if anyone had had a fall, the majority said yes and everyone had balance issues (nb: lunch at the local pub isn’t rigorous science, I know).

But we all try to avoid falling and these things work for me: going to the gym to increase strength sort of helps me bounce instead of fall. Avoiding impatience, avoiding rushing things and taking more care when I am tired. Resting. Not over-estimating my ability (we are all guilty of this!), going easy on the alcohol and simply looking where I’m going.

A friend from the pub lunch has been attending a community health falls prevention program in my local area (Banyule, Vic) called ‘Make a Move’. It is a fantastic program with physiotherapy-based exercises, information sessions from occupational therapists, GPs, physiotherapists, optometrists, nurses and dieticians. Her balance was assessed and had improved after the program.

Falls prevention is very important in taking care of yourself and preventing injury. Some good starting places are local councils and community health organisations. There are some email addresses below that could be helpful.

With the festive season nearly upon us just remember to take it easy - not too much partying - and steady on the egg-nog .Have a great Christmas and New Year!

Don’t fall for it. Falls can be prevented! A consumer booklet published by the government is available on the internet link below and downloadable as a pdf or can be ordered by phoning call the Aged Care Information Line on 1800 500 853.

Aged Care Information Line

Falls clinics are available in most states, ask your GP or allied health professional for more information or refer to following internet links:

Victorian Falls Clinic Information:
NARI (03) 8387 2305

WA Falls Clinic Information

ACT Falls Clinic Information

NSW Falls Clinic Information

SA Falls Clinic Information

TAS falls clinic:
Department’s Falls Prevention Clinic on (03) 6222 7312.

QLD Falls Clinic Information

The National Stroke Foundation is conducting a national survey of stroke survivors and carers of stroke survivors. We need your help to find out what stroke support or services are currently needed in Australia. The survey provides a unique chance to have your say on what needs are not met after a stroke. This information will be used to inform future strategy and advocacy work of the National Stroke Foundation. Many of you will soon receive a survey in your mailbox and we encourage you to complete and return to the NSF or complete over the telephone. For other people who don’t receive a survey and would like to participate please email Jacqui McKenzie