Managing chronic conditions

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Help improve Australian healthcare! By sharing your health experiences and ideas, you can help consumer advocates and consumer organisations work for change that improves things for you, patients, carers, families and communities. 

  • Patient Opinion's picture

    National Centre for Neuroimmunology and Emerging Diseases (NCNED) at Griffith University

    Many people have asked about my visit to the Clinic so here is a good place to share! I donated blood to Griffith Uni's research into Chronic Fatigue Syndrome and Myalgic Encephalomyelitis before my visit, so they had this information already. You do fill out a lengthy form before your appointment, submitted along with the referral from your GP. I waited around 4 months for an appointment as they only see patients on Fridays. The visit begins with a physical examination with a doctor (sorry I forget her name), then a consultation with a specialist and the examining doctor. The specialist...Read more
  • MVohra's picture

    Chronic Disease Prevention and Management in Primary Health Care – HAVE YOUR SAY

    CHF is preparing a submission on the Inquiry into and report on best practice chronic disease prevention and management in primary health care . The inquiry has been referred by the Minister for Health, The Hon Sussan Ley MP , to the House of Representatives Standing Committee on Health. We want to hear your ideas on best practice and innovative models which incentivise access, quality and efficiency in chronic disease prevention and management for consumers. The scope for the inquiry is broad and covers: examples of best practice in chronic disease prevention and management, opportunities...Read more
  • From Latest News's picture

    NSW: Do you have osteoporosis or diabetes or depression?

    NPS Medicinewise is looking for adults who have osteoporosis or diabetes or depression to take part in a group discussion on Tuesday 2 June and Wednesday 3 June 2015. These focus groups will be held in Surry Hills near Sydney’s Central Station, and participants will be required to arrange their own travel for this activity. For information and to register visit: more
  • Patient Opinion's picture

    Exceptional Service in the Emergency Department TTH

    My little child struggles with asthma from time to time. Most often it is bought on by a throat infection or cold. Being a registered nurse myself, I won't waste the Emergency Deartment's time if it is something that I can treat myself and my next step if needed is seeing the GP. We are generally blessed when my child is sick, they’re a trouper, sleeps through and rarely wakes. Though sometimes things gets bad and it doesn't matter how much of a medical back ground you have, when you are presented with an inconsolable sick child, you always feel so helpless. Well I do anyway...Read more
  • Babsjen's picture

    Let down trust lost

    I started having lower back pain September 2012 for no apparent reason. The pain continued and got worse over such a short period of time. I went to my Gp and was sent for an X-ray. After the report was received I was referred to a Neurosurgeon for ongoing care and an Mri was conducted. It was found I had issues with L4/5 and S1 of my spine and put on very strong medication. I had several injections placed in my back to no avail. Hospitalised by one of them as went in too far and peirced my spinal fluid resulting in severe headaches. I was in hospital for 2 weeks and received blood patches to...Read more
  • Patient Opinion's picture

    Sick and tired of being left sick and tired due to poor treatment!

    I was first diagnosed with Hypothyroidism in 2012 after doing everything I could to lose weight with little success. I dutifully took the Thyroxine script that my doctor gave me for the next 18 months (increasing my dosage every 3-6 months) with only a few changes to my symptoms. In mid 2014, I took a 10 week leave of absence from work to travel. What should have been a rejuvenating holiday felt like hard work and I ended up spending at least one day out of every 3 weeks in bed all day recovering. While I was travelling I thought "there must be a better life than this" and so I...Read more
  • Patient Opinion's picture

    Quality service received from the Cerebral Palsy League

    I was so impressed of the service I have received from the Cerebral Palsy League (now known as CPL). I have been supported by them since was first diagnosed with Mild Cerebral Palsy Spastic Diplegia at the age of 18 months. As I have grown older, my level of support has lessened and I now no longer need an intense level of support. The reassuring knowledge that this service is always available to me is invaluable. Through my time at high school I had an annual visit by someone who was dedicated to providing me with any support I may have required. Now I am about to start university, I know...Read more
  • Patient Opinion's picture

    Parent in late 70's who has experienced unbearable pain with colonoscopy

    Parent with multiple health issues needs regular colonoscopy. 2012 experienced extreme discomfort with procedure. 2013 excruciating pain with procedure- feeling all that was done incl all polyps surgery and commenting on feeling the trainee being quite rough. My mother agrees that she is capable of suffering considerable pain-but this was too much. I gather she was squeezing the nurses hand. I think some extra medication may have been given but it did not help. My mother broke down days later in her GP's office over this - and the GP said never go back there. Unfortunately due to her age...Read more
  • Patient Opinion's picture

    Have come a long, long way with the CCSS, Metro North Brisbane Medicare Local.

    For many years I have suffered from many complaints such as complex migraines and other complex issues. Having been here at the Logan ATSICH’s under the care of Dr P and my amazing care co-ordinator Belinda, I have come a long way. Belinda has organised many things for me such as linking transport, physio and dietician appointments and help to access programs like ‘Pain Heroes’. Also in my time here Belinda has helped me by arranging O. T. to come to my home, helped with pain and supplements much needed. She has always been helpful and gives hope and encouragement. Belinda has also been there...Read more
  • Patient Opinion's picture

    Couldn't survive without the CCSS program with Metro North Brisbane Medicare Local.

    I don’t think that Indigenous people on disability pensions would survive without the CCSS programs. I believe I would be in hospital every day with high BP, breathing problems, as well as other problems. If it wasn’t for Kylie my nurse from the CCSS Program I would be up a well known creek without a paddle. She has allowed me to have my dignity back by not going into hospital all the time. I am one of the stolen generation adults now and I hate being locked up, like to stay home and be free.Read more
  • Patient Opinion's picture

    Staff I saw at Logan ATSICHS are gentle and caring, and treat you with respect and kindness.

    What can I say about the way I am cared for by doctor’s and staff. I am always welcomed with a smile by the front counter people. As for nurses, well they bend over backwards. When they are giving you needles or doing sugar test I feel nothing as they are so gentle and caring. And if I want to ask them something and they are not sure they will go out of their way to find out the best solution to help as I am a chronic disease patient. They have helped me with all my needs to help make my life more comfortable which I can never thank them all enough. I have never had to wait long to see a...Read more
  • Patient Opinion's picture

    I don't feel listened too.

    I've been dialysing for awhile now but over the last few years some of the nurses they have been getting in, that I have seen, don't seem to want to listen to any questions about your problems you're having with dialysis. When you ask for blood tests because you know something is wrong in your own body they seem to ignore every request until you start discussing your problems with other patients only then do they do anything apparently. I think the nurses you can rely on are sent to places like HDU or Limited care and we seem to get the leftover ones who sit down at the desk...Read more
  • Patient Opinion's picture

    Confused and conflicting information given by a Pain Management Clinic, Devonport, Tasmania.

    Visited a pain specialist in Devonport, told me one thing then when I went to book another appointment it seemed to me that everything I was told had changed, before they said they would bulk bill and that because of my condition it was not necessary to go to the pain clinic in Hobart as I had already been to a number of pain clinics and then said that the clinic would not be able to do anything for me. I seem to remember that they said that there was a new pain killer on the market and they would let me know when it comes on the PBS as I am on a disability pension and cannot afford much. I...Read more
  • Tasmanian_Girl's picture

    Coping with the impact of stroke.

    About 2 and a half years ago I had a ‘warning stroke’. This was a relatively minor stroke, and I did not know where to turn. I lived alone. I got better by just staying in bed and letting the body heal itself. It left me with some disabilities such as poor balance, poor memory, lowered concentration abilities, shortened stamina, and other, social, losses. I find I have forgotten how to behave in social settings; for example, my patience and toleration levels have fallen and it is often difficult for me to hold my tongue when people say things which to me seem foolish, or behave in ways that...Read more
  • Patient Opinion's picture

    I felt the specialist at the Plaza Ipswich didn't care about me at all.

    I went to get test results today 2 months after my initial consultation which was done by a wonderful Registrar I can not fault her at all! The specialist today was so uncaring and aloof... I was basically told I was a drug addicted alcoholic hypochondriac! ! He told me I had Parkinsonism and I understood him to suggest that really there was nothing he could do about it. I don't feel he even told me what it was except it wasn't like Parkinson's disease. I feel I was basically told he couldn't help me and that was that. I reported I collapsed twice in the last month where...Read more
  • APMA's picture

    Is the health system meeting your pain needs?

    More than 3 million Australians live with persistent pain. And a very large proportion of these people - estimated at more than 90% - are unable to obtain effective treatment for their pain. On-going treatment, procedures and medications are increasingly expensive - or simply unaffordable. The number of pain specialists is woefully inadequate, many GP s don’t have the time - or understanding of pain management - to support patients with chronic diseases such as persistent pain, and physios, pharmacists and other health professionals aren’t encouraged to work in partnership with GP...Read more
  • Jodiesjourneycom's picture

    The impact of physical appearance, during treatment.

    The practicalities of hair loss and a reflection of how loss of hair effects your mental stability and emotional confidence. HAIR LOSS WITH CANCER TREATMENT. • My first wrestle with cancer (I was completely exhausted and in alot of physical pain) - My hair only started to fall out when I started on a 2nd round of stronger chemo called (R-CHOP). The first try was with 2 doses of (CVP) chemo that proved not strong enough to move the cancer, which was everywhere @ stage 4, embedded in nerves, bones and muscles. So, we had to go for the next stronger kind - a step up the chemo ladder. It was not...Read more
  • Patient Opinion's picture

    St Andrew's (Pulmonary Rehabilitation Outpatient Program)

    St Andrews private hospital in Spring Hill advertises itself as 'first class treatment', 'world class results' - but this is not what I have experienced. Nine days later I am still waiting to be called back and given the appointment I have requested. Initially I rang and could not get through; so I rang the next day and the phone extension just went repeatedly to a message bank service. In fact on that day I rang no less than four times and in the final message in exasperation specifically stating that I needed to be called back - I was never called back! Four (4) days...Read more
  • APMA's picture

    Long waiting times for pain-management programs

    If you have persistent (chronic) pain, you will understand how important it is to access timely treatment, information and support. Even short delays can negatively impact our quality of life and make us feel isolated and forgotten by the medical community. Yet the average Australian is forced to wait for between six months and three years to attend a multidisciplinary pain-management program (if there’s even a program available in their area). If this has been your experience, you know that waiting for such a long time feels even longer when you’re in constant pain. We want to...Read more
  • Jemm's picture

    ADHD Adult's Discriminated Against

    I am 58 years old and have suffered with ADHD all my life, but it was only diagnosed last year. Strattera one of the ADHD drugs is only available at PBS prices if the ADHD was diagnosed when you were a child. What about those of us who had it when there was no diagnosis available? What about educating the community and general health care providers that this is a real condition with many co-related conditions e.g. anxiety and that it can effect the quality of life of anyone with it. It is not simply a child 'misbehaving' or ignoring authority. Asking someone with inattentive ADHD to...Read more
  • Paula's picture

    Asthma care

    There are a lot of people living with asthma and I hope that some good ideas will be shared at the Tackling Asthma Conference next week. It’s great that there will be a consumer voice in some of the main sessions. As a person with asthma, or a carer of someone with asthma what would you recommend needs to be done to improve asthma care?Read more
  • Patient Opinion's picture

    I have been given no real information about how my treatment fits in with my ability to work

    A little over ten years ago I began falling after a cartilage repair. X-rays showed a mass reported as a trabecular. I had my knee checked some years later by an orthopaedist after difficulty walking. In 2010 I fell and couldn’t get up and was told to bed rest for a month. Right Knee was painful. Right leg was weak. Happened again in 2011 and 2012 and a bakers cyst was found to have occluded the popliteal vein and was pressuring its accompanying nerve. Mid 2012 I was operated on and I gained a major increase in mobility immediately as well as a much better outlook. Late 2012 right leg...Read more
  • Patient Opinion's picture

    Gynaecologist appointment in Brisbane

    I went to see a gynaecologist in Wickham Terrace, Brisbane, as I needed to have a hysterectomy ASAP. This had already been decided at the Royal Brisbane and Women’s Hospital, but I wanted to go private to get it done sooner. I explained to the gynaecologist that my very enlarged uterus was pressing on my ureter causing urine to back up, resulting in hydronephritis and a hydroureter and high blood pressure. The gynaecologist questioned if this was because of the uterus, and seemed to think it may be because of a kidney stone. Even though I appreciated the exploration of all possibilities, I...Read more
  • lizzym's picture

    Impressed by the service

    Recently I took my mother to an appointment in Frankston, Victoria to see her Radiologist. Her breast cancer had returned, and she had just had surgery to remove it, and required some radiation treatment. Unfortunately as I live inter-state I was unable to take her when she had previously had treatment. I was so impressed by the service we received from reception, to the Radiologist and all the way through to the assistant who made Mum's future appointments. I know she will be in good hands during her treatment...Read more
  • Lesley Brydon's picture

    “Visceral Pain” – Its actually very common

    I’d never thought much at all about the term “Visceral Pain” before this week, when I heard about the launch of the Global Year against Visceral Pain (GYAVP) . Turning to my medical dictionary, I found that it refers to pain that originates in or near the internal organs and that it is the most common form of pain and the number one reason for patients to seek medical attention. I know many people who suffer from some form of visceral pain such as pelvic pain, irritable bowel, pancreatitis, appendicitis, diverticulitis and bladder or chest pain ( I’ve had some of those myself). It is the most...Read more
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