| # Respondents: 22 | Yes: 3 | No: 17 |
Number of hours / week: range between 1 and 14
- I am not eligible it seems – I did ask for help – GP tried
- No. None as yet.
- When I did, 1 hour a week, and found mostly all not good
- Has not been offered
- Have applied for physio at home on a weekly basis too
- I get Personal Care which is mainly to help me with showers, getting meals ready, getting in & out of the car to appointments, and changing for hydrotherapy, help lifting my baby, help bring my washing in or out. I do not get any support for housework. I have 10 – 14 hours per week.
- Originally had two hours per week for several years then reduced to two per fortnight – now stopped – the reason – I can still drive and go to the shops!
- Too young and still working so get no support to be able to stay so! It is exhausting running a house with my condition.
- Don’t need it at this time but could in the future.
A question that has been asked is “If this disease is one that is not know by many medical people and almost certainly unknown to social service providers, can there be a fair provision of assistance? “ Most people do not receive any assistance and of those who have in the past, most have seen the hours diminished or removed.
| Scale | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 |
|---|---|---|---|---|---|---|---|---|---|---|
| # Respondents | 1 | 1 | 3 | 3 | 6 | 2 | 3 |
# Respondents: 19 Range: 1-10 Average personal knowledge rating: 7.2
Comments
- I read a lot and research on the internet – scleroderma .org etc
- I have nursing as a background and without my own research would still be completely in the dark
- Still learning every day
- I have done a lot of research into my condition
- Could be better but over it now – nothing new to me
- Continue to seek information on the internet– take a balanced view and discuss with doctor and specialist – a continuing learning curve
- Lots available on line
- I made an effort to read up a lot at the beginning; now I don’t want to know the inevitable.
There appears to be an active interest among those with this condition increasing their own knowledge. Ratings ranged from 1-10 with an average of 7.2 Given the complex nature of this condition, this is probably a very optimistic view of the level of knowledge actually held, but it could well be a focus for future patient education. This is already happening through support groups and patient education days in a focussed way, whereas more guidance would be beneficial to those seeking information through individual unguided efforts.
20 On a scale of 1-10, what level of encouragement do you receive to manage your condition from your care providers?
Care Provider
GP
| Scale | 1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 | 9 | 10 |
|---|---|---|---|---|---|---|---|---|---|---|
| # Respondents | 1 | 2 | 2 | 2 | 2 | 2 | 8 |
# Respondents: 19 Range: 1-10 Average encouragement rating: 7.4 Specialist
Specialist
| Date | Time | Venue | Notes |
|---|---|---|---|
| 7 May 2016 | 1.30pm | Russell Keown House, cnr. of Queens Drive & Knights Rd, Lower Hutt | Our Speaker for May will be Sarah Crawford, NZRD,Consultant Dietitian, Ropata Medical Specialists. She will be talking on good food etc for Scleroderma folk. |
# Respondents: 19 Range: 2-10 Average encouragement rating: 7.4
Family
| 08.45 am | Registrations, Morning tea and chat with other members |
|---|---|
| 9.30 am | Welcome Linda Bell Scleroderma Waikato, Trevor Fredericks, Hamilton Arthritis Educator |
| 9.50 am | Registrar, Waikato Rheumatology Department |
| 10.15 am | Anna Schollum, Rheumatology Specialist Nurse |
| 10.45 am | Dr. Kamal Solanki, Scleroderma Specialist, Waikato Rheumatology Department |
| 11.45 am | Dr. Kamal Solanki, Scleroderma Specialist, Waikato Rheumatology Department |
| LUNCH | |
| 1.15 pm | Helen Morton, Mobile Pharmacist, Midland Community Pharmacy Group. Do you understand your medicines and why you take them? Do you know when it is best to take your medicines? Do you sometimes forget to take your medicines? Have your medicines changed recently? You have the opportunity to ask and questions you may have about your medicines. |
| Afternoon tea and Raffles will be drawn | |
| 2.15 pm | Sue Henderson, Midland, Community Dietician Waikato Hospital |
# Respondents: 19 Range: 2-10 Average encouragement rating: 5.9
Other: Listed were naturopath, osteopath, physiotherapist, and acupuncturist.
Comments
- Family ignore my condition – don’t want to know. GP is most helpful and cheers me up.
- My GP is encouraging and supportive but even he sees me as a complex patient with many different conditions
- Don’t need any encouragement
- I have learned to cope each day and am better than I was in the first 15 years
- I insisted that my specialist start me on 100 gms of minocycling which I take Monday, Wednesday and Friday. I have a noticeable change in skin hardness, lung function is stable, and hand use has improved.
- Counselling has helped. I have brave motto too
- Other: work 1 – they are terrible!! They just say look after yourself.
- After a number of years of gradual improvement my specialist classes me as “stable”.
- It is a continuing learning pattern for all my family have concerns about my health and I try to ensure they are well informed. They now tend to be less concerned as they see me managing well in a partnership with my health providers
The lowest average of encouragement ratings was for family as care providers. There appears to be a need for family to be better informed about this disease and how they can assist the family member with managing its chronic nature and the levels of fatigue etc that characterize it. While there is some patient oriented literature available from overseas sources, often those with systemic sclerosis do not have copies of this and as a consequence, families do not have access to reliable, up to date information. Again, the internet is a major source of information, but this needs to be carefully assessed for current reliability. Perhaps this gap could be addressed and a reading list be developed.
21 What major concerns do you have about your future as a scleroderma patient?
The comments speak for themselves. The concerns are varied with the uncertainty of the future being a major theme. Those with systemic sclerosis are continually seeking information and assurance about their future and the life style they will need to adopt.
There are plenty of challenges ahead.
- Lack of monitoring for conditions such as renal failure, respiratory decline, echocardiogram for PAH, and access to up to date treatment for serious conditions such as PAH and lung fibrosis
- Just feel we are too isolated here in New Zealand. I am lucky because my condition is slow progressing but I feel for those who are worse off than me.
- Dying! Not being able to access suitable treatment
- Losing my ability to work in my current profession
- I have had 2 episodes of breast cancer, many admissions to hospital for bronchiectasis, regular cytoscopies for Cystica (risk of malignancy). Regular colonoscopies because of bowel polyps (high risk of malignancy). I have faecal incontinence with no support or diagnosis, reflux and difficulty with swallowing. I am concerned that I do not have any way of measuring the disease progress. At the moment I am in considerable pain and don’t know whether it is related to the breast cancer medication I am taking or deteriorating scleroderma. It is up to me to sort it out, so have made an appointment with my oncologist to see if I can trial a different drug for now. I am frustrated with dis-joint care, no regular monitoring and feel that if I was not proactive in finding my own solutions I would be in a very sorry place by now.
- I do not know what the future holds – hope to just keep going and hope not to have a major problem
- Like many scleroderma patients the unknown way this condition progresses is very scary. I have no option but to take each day as it comes and deal with the problems as they happen.
- Keep head up – seek help – support from others
- Respiratory function / renal function / heart function
- Losing more muscle strength and getting more stiff with limited movements in my fingers and joints as they are getting more crooked and stiff
- If my health continues as I am now I will cope reasonably well.
- Continuing access to well informed health providers – I hate it when I have a change of specialist and find I am having to educate them as Scleroderma gets dumped on them to manage. Some know very little about it and can only deal with symptoms that come within their own area of speciality.
- I have no real understanding as to the invasiveness of the condition (limited scleroderma) looking into the future. I worry about my excessive tiredness, and possible internal issues? Eg: oesophageal reflux, heart lung as things progress? I worry about my future as a healthy active woman of 39 yrs and her ability to keep up with her children and her husband. This makes me terribly sad. I have been told the condition is advancing somewhat. : ‘The complements (in the blood test results) indicate that the autoimmune disease is showing some activity but together with the other tests is minor. The IgA slight reduction is of minimal significance’. I seem to have caught every cold, flu and infection there has been this winter – so my immunity must be taking a hammering with the drugs I am taking.