General Health Information

Quick reference:

There is an extensive amount of information available about spinal cord injury (SCI) and health care available on the internet. The Spinal Cord Injuries Australia (SCIA) website (www.scia.org.au) has both written information and videos on many aspects of SCI health care, and is regularly updated. Other useful sites include www.sci-info-pages.com and www.sci.rutgers.edu. The SpinalWA website does not intend to replicate this information, rather to direct you to the best sources of information for people with SCI living in Western Australia.

Fiona Stanley Hospital Patient Care Manual

Patients will be able view the latest version of  the patient care manual on the hospital website, PDF versions of each part of the manual are available below:

Information For Health Professionals

Royal Perth Hospital has prepared a series of information brochures for Health Professionals on care of SCI patients. PDF versions of these brochures are available below

The Paralyzed Veterans of America (PVA) have produced several clinical practice guidelines for health care professionals which can be downloaded free of charge from www.pva.org. These are evidence-based best practice guidelines and include information on Autonomic Dysreflexia, Pressure Ulcers, Bladder Management, Sexuality and Reproductive Health, Respiratory Management, and Preservation of Upper Limb Function.

The International Spinal Cord Society (ISCoS) has developed a web-based teaching and educational resource for health professionals (www.elearnsci.org). The aim of this resource is to provide comprehensive information on SCI management to all medical & paramedical disciplines involved in SCI care. The website provides information for Doctors, Nurses, Physiotherapists, Occupational Therapists/Assistive Technologists, and Psychologists/ Social Workers / Peer Counsellors. Elearning modules contain a presentation on the topic, activity-based learning exercises, references and self-assessment questions.

Recommended Health Checks

To maintain your general health the following check-ups are recommended for people with SCI in addition to those recommended for the general population. These may be performed by your GP or may require referral to a specialist. The NSW Agency for Clinical Innovation also provides a useful guide on general health maintenance recommended for people with SCI.

Kidney and Bladder

  • Renal ultrasound every year for the first 3 years after injury, then every 2 years
  • Urodynamics testing (cystometry) every year for people using intermittent self catheterization (ISC)
  • Review of electrolytes and renal function (UEC and estimated GFR) every year

Bowel Program

  • Review regularity, consistency, use of laxatives/enemas, time to complete routine, blood or mucus in stool every year

 Respiration

  • Check respiratory function (resting respiratory rate and peak flow) every year
  • Influenza immunisation every year for people with SCI above T8
  • Pneumococcal pneumonia vaccination for SCI at T8 or higher, to be given at earliest opportunity and repeated at age 50 and 65

Cardiovascular

  • From 45 years of age check for diabetes (triglycerides, cholesterol and fasting blood sugar) every 1-2 years
  • Check weight and/or waist circumference every year
  • Check peripheral pulses every year

Neuromuscular

  • Check for alterations in sensation, muscle strength, pain and spasticity every year
  • Check range of motion of joints and check for overuse syndromes in shoulders and wrists every year
When to see your doctor

You should arrange a prompt medical review if have any of the following signs or symptoms:

  • Change in bladder drainage or incontinence, frequent urinary tract infections (more than 3 in a year), calcified material or blood in urine
  • Changes in bowel function (eg constipation, incontinence), increased use of laxatives, abdominal pain/bloating
  • Skin breakdown or delayed healing of pressure areas (more than 4 weeks duration)
  • Autonomic dysreflexia (pounding headache, blurred vision, sweating, rash)
  • Coughing, fever, shortness of breath, chest pain
  • Unexplained increase in muscle spasms/tone
  • New or worsening pain
  • Loss/change in sensation
  • Muscle weakness, loss of coordination, altered balance or change in sitting posture
  • Signs of possible depression (unexplained weight loss, difficulty sleeping, anxiety, sadness, irritability, feeling unable to cope)
  • Increased daytime sleepiness, memory disturbance, poor concentration, snoring at night
 Home Visiting Nursing Service

The Quadriplegic Centre has two full-time registered nurses who perform free home visits for all people with a spinal cord injury in the metropolitan area and some country areas. These nurses can provide treatment (eg pressure sore dressing) and information on all health matters. They can also provide referrals to appropriate agencies, organise access to respite care and can provide advocacy regarding care issues.

The service is available Monday to Friday, tel: (08) 9381 0124 between working hours or during the day on the following numbers:

Northern suburbs/northern country (up to Geraldton):0409 683 603,

Southern suburbs/south-west country (up to Albany): 0417 977 299

Eastern suburbs/eastern country (up to Kalgoorlie and Esperance): 0409 894 185

If you are unsure of which area you fit into, call any number and the responding nurse will be able to put you in touch with the right contact.

Bladder

The latest version of the Fiona Stanley Hospital SCI patient care manual for bladder management can be accessed here. Information for Health Service providers can be found here. The Paralyzed Veterans of America website (www.pva.org) provides free PDF downloads of ‘Bladder Management Following SCI’ which details the best evidence-based practice for bladder management at different levels of SCI. A medical practitioner’s version is also available.

What to do if you are having continence issues

  • Leaking/smelly urine/temperature/blood in urine? – Arrange to have a urine sample tested through your GP urgently as you will probably need antibiotic treatment. Do not wait a few days as you may end up in hospital or even cause permanent damage to your kidneys
  • Leaking more than usual but feeling ok? The first step is to check if you have a UTI (urinary tract infection). Arrange to have a urine sample tested through your GP (you may be able to arrange this through your regular GP without making an appointment). Drink extra fluids and take a few Ural sachets to try and flush out any potential bugs. If the results show that you do not have a UTI but you are still leaking then contact the Spinal Urology nurse for further advice. To contact the Spinal Urology nurse please call Fiona Stanley Hospital 6152 2222. If you do have a UTI your GP will arrange antibiotics if necessary
  • Botox no longer working? – If you are starting to leak and think that you may need another botox injection please get a urine sample checked for UTI through your GP. If your urine results are clear but you are still leaking contact the Spinal Urology nurse to discuss the next step.
  • Other problems – If you are having issues with catheters, need some advice on continence products or have other questions about bladder management you can contact the Spinal Community Nurses on 9381 0124 (Mon-Fri office hours). This nursing service can also come to your home. For more information click here.

Need more tips and tricks about continence?  Brought to you by Spinal Cord Injuries Australia, listen to people with a spinal cord injury as well as healthcare professionals talk frankly and openly about continence, from tips and tricks to the more embarrassing situations. In the style of the popular ABC show You Can’t Ask That, listen to their personal stories about how to deal with continence issues whilst travelling, playing sport and going out as well as how to cope with and prevent UTIs and accidents. Click here and watch all four episodes of Stories from the Smallest Room by SCIA.

Annual check ups

Bladder and kidney issues are one of the highest causes of readmission to hospital following SCI. It is essential that you have the following tests once a year:

  • Renal ultrasound – This is to look at your kidneys/ureters/bladder and check that your kidneys are safe with your current bladder management. It is also an opportunity to check how well you are emptying your bladder
  • Urodynamics – This test checks how your bladder reacts when it fills, measures pressures in your bladder to make sure your kidneys are protected and checks how well your bladder medications are working. This test is not necessary for indwelling/suprapubic catheter users who do not use a flipflo valve
  • Urology review – An appointment with a doctor/Spinal Urology nurse to discuss any problems you are having with bladder management

How to arrange a Spinal Urology appointment at Fiona Stanley Hospital

The outpatient staff and Spinal Urology nurse try to ensure that all spinal patients are seen for annual review, but it is important that you take responsibility for making sure that you have a check-up every year. If you have not been seen for over 12 months it is important that you take the initiative!

  • Have you been seen at Fiona Stanley Hospital before, but not in the last 12 months? – You need to call FSH State Rehabilitation Outpatients, Level 1 (6152 7329) who will be able to contact the relevant staff to arrange an appointment for you.
  • Never been seen by Spinal Urology at Fiona Stanley Hospital? – Call FSH State Rehabilitation Outpatients, Level 1 (6152 7329) to find out if they have a current Urology referral for you. If not, you will need a referral from your GP to the Spinal Urology service. Outpatients will then notify you of your appointment date. If you have a current referral but have not been seen for over 12 months please tell the outpatient staff who will take the necessary steps to arrange an appointment for you.

Feedback about healthcare at Fiona Stanley Hospital

The vision statement for FSH is that ‘Fiona Stanley Hospital is committed to the best patient outcomes and excellence in healthcare’. It is important that you give the hospital your feedback about your healthcare because it lets them know what is working well and what can be improved. All feedback is welcome and can be given by phone, email, in person, in writing or via the hospital’s website. Contact details can be found here.

Bowel

There is no outreach service for bowel management available in Western Australia. If you are having problems with bowel management you will need to contact your GP for help. There is also a lot of information available from on-line discussion forums (go to our link On-Line Health Forums).

Pain Management

Chronic pain is a term used for pain that does not resolve within a few weeks, chronic pain may persist for months or years. Clinical studies have shown that approximately 60% of people with SCI will have problems with chronic pain. Chronic pain can decrease your quality of life, and interfere with sleep and daily activities. Inadequate treatment can cause anger and frustration, isolation, depression and sleeplessness, which can then lead to more pain. Pain management uses pharmacological and nonpharmacological therapies to improve function and allow people to participate in day-to-day activities.

Some excellent information about types of pain following SCI and treatment options are available from the NSW Agency for Clinical Innovation (ACI) Pain Management Network http://www.aci.health.nsw.gov.au/chronic-pain/spinal-cord-injury-pain, the Rehabilitation Medicine Department, University of Washington (http://sci.washington.edu/info/pamphlets/msktc-pain.asp), and the Christopher and Dana Reeve Foundation (http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.4453423/k.B38D/Pain.htm).

Research has shown that for people with chronic pain an understanding of how pain responses are produced by the brain, and why pain can persist after injury can help in the treatment of their pain. A useful resource for understanding pain is a book (written in everyday language) ‘Explain Pain’ by David S. Butler and G. Lorimer Moseley (Noigroup Publications, Australia). This book is available in hard copy from Amazon and other on-line retailers, and also as an ebook.

At a recent showcase of Research on SCI in Western Australia, Dr Alison Kirkman and Ms Bianca Burro from the School of Physiotherapy at the University of Notre Dame gave a presentation on ‘Pain in SCI’. This presentation can be viewed on YouTube by clicking here.
A presentation by Dr Philip Finch from Murdoch University about his current research project on chronic pain can be viewed here

Autonomic Dysreflexia

Please see the Fiona Stanley Hospital Patient Care Manual (available here). The Paralyzed Veterans of America website (www.pva.org) also provides free PDF downloads of ‘Autonomic Dysreflexia – What You Should Know’ which details the best evidence-based practice for management of dysreflexia.

Skin/Pressure Sores/Seating

The Paralyzed Veterans of America website (www.pva.org) provides free PDF downloads of ‘Pressure Ulcers – What You Should Know’ which details the best evidence-based practice on causes, prevention and treatment of pressure ulcers.

Incorrect seating and poor pressure management is a major cause of pressure sores for people with SCI. This can result in serious life-threatening complications as well as extended hospitalisation and surgery. Pressure injuries are the most common cause of readmission to ward 1A.

An important factor in prevention of pressure ulcers is using a suitable cushion in your wheelchair. On discharge from Fiona Stanley Hospital you will be issued with a cushion from the Rehabilitation Engineering Department who will also record your seating pressures. If you have been given a foam cushion by Rehabilitation Engineering this cushion needs to be replaced after 6 months as the foam will deteriorate and will not provide the same cushioning effect. Do not rely on Rehab Engineering Clinic to contact you when your cushion needs replacing, call them (tel: (08) 6152 7047) when your appointment is due to ensure that you are seen. There is also a seating mapping system available at Rehabilitation Engineering which shows the complete distribution of pressure over the entire cushion surface. This is a much more accurate picture of how suitable your cushion is but is rarely offered to patients, request this service if you have any concerns about your seating position

The funding system for equipment from Rehabilitation Engineering has also recently changed and you will be charged for services unless:

  • the equipment is needed as an inpatient or within 3 months from discharge (no charge for equipment or appointment)
  • If the equipment need relates to a compensable incident the compensation fund should pay for the equipment and the appointment. Compensable clients are usually those who have received or will receive compensation through ICWA / Workers Comp / other states vehicle accident compensation funds. Compensable clients pay for the equipment and all appointment costs. The Clinic needs to have their claim number and relevant contact person at their insurer to progress any referral for services.
  •  If the person is eligible under Department of Veterans Affairs then the Rehabilitation Appliances Program will fund the equipment and Health Department of WA pays for the assessment and any other appointment costs.
  • If the equipment need relates to a long term disability then the person needs to apply for CAEP funding (more info here). CAEP only funds the equipment, repair and fitting costs, Health Department of WA pays for the assessment and appointment.
  • Although a lot of people are ineligible for CAEP because they do not have a pension or health care card they can sometimes apply for a mobility allowance which will then give them a health care card (more info here).
  • If the person is not eligible for any of the above then there are some equipment funding grants (http://www.ilc.com.au/pages/grants-and-equipment-funding-programme ) that will fund the equipment but not the assessment, consultation and fitting costs. The person would need to fund these costs.

If you are not eligible for funding the Rehabilitation Engineering Clinic charges approximately $100 for an appointment and $200 upwards for one of their foam cushions which has to be replaced after 6 months. There is no Medicare rebate or Private Health fund cover for any of these services

Other seating specialist services who are CAEP providers include the Centre for Cerebral Palsy (www.tccp.com.au), Rocky Bay Inc (www.rockybay.org.au) and Disability Services Commission Equipment Therapy Team (www.disability.wa.gov.au). Seating assessments can also be done privately at Brightwater SEATEC (http://www.brightwatergroup.com/rac/seatec-specialised-services.html) and Technology Assisting Disability WA (TADWA, www.tadwa.org.au).

Respiratory Care/Ventilator Program (VDQ-CCP)

The Ventilator Dependent Quadriplegic – Community Care Program (VDQ-CCP) is run by the Rehabilitation and Orthopaedics Division of Royal Perth Hospital. VDQ-CCP enables ventilator dependent patients to return to living in their own home or in residential care. The program provides medical equipment and disposable medical supplies, maintenance and repairs to supplied equipment, funding for training of support workers and funding for 26 hours of care provided by Perth Home Care Services or the Quadriplegic Centre. For further information on eligibility and referral contact the Spinal Unit Ventilator Dependent Quadriplegic Clinical Nurse tel: 0404 894 189.

The Paralyzed Veterans of America website (www.pva.org) provides free PDF downloads of ‘Respiratory Management Following SCI’ which details the best evidence-based practice for respiratory management at different levels of SCI

Sexual Health/Fertility

For general information on sexuality and fertility following SCI go to http://scia.org.au/sci-resources-and-knowledge/health-and-sci-facts/sexuality-and-fertility-and-sci. For more detailed clinical information the Paralyzed Veterans of America website (www.pva.org) provides free PDF downloads of ‘Sexuality and Reproductive Health for Adults with SCI’, the Royal North Shore Hospital in NSW has also produced a booklet ‘Sexuality and Fertility Following SCI’ for Health Professionals (http://www.aci.health.nsw.gov.au/__data/assets/pdf_file/0016/155203/sex_and_fertility.pdf#zoom=100).

Dr Luca D’Orsogna at Fiona Stanley Hospital is a specialist with the sexual health team, this service can be accessed by anyone wanting further information or assistance in this area. To access the sexual health team you will need a referral from your GP or spinal physician. A presentation, and question and answer session, by his predecessor, Dr Cherry, in 2014 can be viewed here. This video contains important information on changes in fertility for men following injury.

Many men with SCI will have problems with fertility after their accident and will require specialist fertility treatment if they wish to start a family. Fertility treatment is no longer available through the public sector and is private only, there are several fertility clinics in Perth.

Stem Cell Treatment

Stem cell research is in its relatively early stages and although laboratory and animal research to date holds great promise for treating a range of illnesses in the future, there are currently no stem cell therapies that are recommended for people with spinal cord injury. Many people with SCI, however, continue to travel overseas for stem cell treatment despite the considerable risk and expense of these treatments in the hope that they will regain some lost function.

If you are considering travelling overseas for stem cell treatment please make sure that you understand the risks involved. The following sites provide information on types of stem cells, current research, clinical trials and also the risks associated with stem cell tourism.

https://spinalnetwork.org.au/node/1647

https://spinalcordinjurynetwork.worldsecuresystems.com/Publications/170320-StemCell2017-eBroch.pdf

On-Line Health Forums

There are several excellent on-line health forums that provide information on SCI health care issues. These sites also offer opportunities to talk to other people with SCI about how they deal with issues such as bowel management, pain and medications. They are also a great place to find out about other people’s experience if you are considering surgery such as removal of rods, baclofen pump insertion, bladder augmentation etc. The sites listed have been around for several years and are carefully moderated to maintain accuracy.

http://sci.rutgers.edu/forum/