22 Any other comments you would like to make
- It seems to me that our health system works to treat the results not to prevent. They seem to love pulling out the medicine or treating you in hospital. The specialists seem cold and distant – not interested in the minor and major difficulties of daily life – how our looks change – the effects of depression and having to stay out of the cold. Difficulties walking, pain – I was told they couldn’t give me anything but panadol for my pain – “you just have to put up with it”. I was also told that they could refer me for all my symptoms to different specialists but it would probably be a waste of time. Basically, put up with it and get on with your life as best you can. Thank goodness for our support group.
- There should be a national monitoring service and the data base should be run by the national support system – there are already existing templates which are already in use for other conditions (screening data bases, maternity, and cardiac base is being set up)
- Simple renal function blood test and blood pressure could be arranged by the rheumatology nurses on a monthly basis and more often depending on the patient – this would not break the bank.
- The lack of knowledge out there amongst the GP‘s worries me
- GPs should be given a list of RED FLAGS and some monitoring guidelines – ie some blood tests and blood pressure testing for patients with Scleroderma from the rheumatology Department.
- I have seen a large improvement in the medical profession. Even in the hospital departments better treatment. It’s been a hard road. The feeling of being alone having the internet has helped greatly. I am still learning about my condition but feel better now than I did in the early years. All we can do is our best each day and learn to cope with problems as they turn up.
- I strongly believe that patients should be made aware of the minocycline treatment. I attended the seminar on 17 October and became aware of another lady that is also on this treatment. She has also seen remarkable improvements. People should be given this choice, what have they to lose! I have some quality to my life again. Last year I was so sick my family and friends and I thought I was on the way to checking out of this world! I think the medication I was on was a big factor to my well being.
- It would be interesting to know more definitively on the prognosis scale. Answers are usually a bit vague. Maybe info on whether we are public or private patients and benefits of each.
- I would like to see as scleroderma patients we get our health monitored more regularly and routinely so we don’t have to chase up on it. We need to be scheduled automatically for appointments once a year for heart, kidney and lung function tests so we don’t have to remind our rheumatologists or wait for some health crises to occur before the relevant tests are done.
- Systemic sclerosis is a very lonely condition – rarity is not something to seek. The support group is fantastic – all members and their families/whanau are dealing with the daily reality of the condition and provide great reassurance to some very scared people that want to know whether they will be able to manage this condition. My two major concerns are (1) the lack of knowledge of so many of our health professionals about this disease and the many and different ways it manifests itself – differently for each person and (2) lack of data we have in New Zealand on the number of people with this auto- immune disease. It is not possible to make good decisions regarding care and medication if there is no data and no possibility of having such agencies as Pharmac consider our needs. No data, no service no satisfaction.
- I would like more information on this condition – worldwide. More research is needed
- Are we to be the forgotten? Because there is so little data available to influence providers such as Pharmac, I am afraid that access to new drugs that will make my life easier will not be possible. As this is a chronic incurable disease I can see me needing medical support for the rest of my life. Am I facing a future of “cheap drugs” because there are insufficient people with this condition to provide political weight to access the latest medications that are the outcome of overseas research? It seems to be the case for other people with rare diseases.
Respondents have voiced a wide range of concerns about their individual futures. Those with decision making authority in the wider community need to take notice, and where possible address these.
Thanks
I would like to thank all those who have responded to this survey and been so open about their concerns. There is much to learn whether the reader is a care giver, or has one or other form of systemic sclerosis. The support given by such individuals and also the New Zealand support groups is much appreciated and is slowly raising the profile of systemic sclerosis and the need to address various concerns.
Adrienne Burleigh
adrienne.burleigh@xtra.co.nz