Which three things would matter most to you about acc... - NRAS
Which three things would matter most to you about access to a rheumatology service?
Shivam-NRAS458 VotersPlease select all that apply:
Aren't 2 and 4 rather too similar.... It will be difficult to tease out what people meant by help when I need it to set it apart from treatment and care when I need it.
Thank you for pointing this out.
Option no.2 refers to getting immediate help when you have a flare or have a problem with side effects of your medication via the nurse helpline for example, where as, Option no. 4 refers getting access to the right treatments and services, such as getting onto a new drug in a timely manner. Hope that clarifies your question 
Why so few responses? Come on people, get voting, it's our future.
The email arrived at 5.10pm, maybe others haven't got theirs yet?
We are not all able to be on line 247. I am sure responses will grow.
Since 1982 I have seen one consultant in 1994 and one cos I paid private for it in 2012 as I was worried about something. As I cannot have any drugs cos of allergies and complications. I am not under anyone. I am glad I learnt medicine and PhD Immunology else I would get more worried. I have answered the poll as wishes. NOT what I get.
We all need to be treated as individuals
If only the answers could be put into practice 
I think all of the options are important - as soon as I read them I found it difficult to choose I wanted to tick all of them.
Why may we chose only three options, shouldn't one have ALL of them ideally ???? Where did you learn your methodology, Shivam ?
I've submitted my three on here... but I've just seen the poll on Twitter and you can rate the answers from 1-8 which I found better..however I couldn't submit it as I don't have Facebook. A couple of the answers I found fairly similar too BUT thank you for running the poll..good to know someone is actually taking an interest in what we want!
I was discharged after I was told I had CMT with no help. I got about of help because I have arthritis, eg a stairlift. I'm sure I have Lupus but when I mention it, no one takes any notice. It's as if I haven't spoken.
I only chose the one that mattered most to me as I have been let down by the system. Four years of living pain and am back at square one. Not under anyone and no help from the exalted ones. Thank god for a GP who cares
I hope that receive emails about any thing helping to reduce effects of RA, e.g. exercise and something to do as daily routines. cheers
Is there any way of expanding the labels on the graph? I'm interested in the responses but can't tell/remember what each answer was.
Just tap/click on each question Flow, you should then see the question in full.
Nope, thanks no oreheels, but that doesn't work. Now I've answered the questions, I can't see them at all any more; I can only see the graph, and its labels only include the first few words of each Q.
That's odd, I wondered if mine had changed but no, it's still the same. Maybe it's dependant on the device used? I'm on my tablet.
I've just checked on the laptop & it appears as on my tablet, first few words of each question but if I just place the pointer over the questions they appear in full. Even odder! Sorry, out of suggestions but if you've been able to submit it hopefully it should be counted.
Thanks. I'm on an iPad... I have been able to respond fine, but I wanted to see what other people's responses were...
Just read what you said about 2 and 4, I would want both, voted for 4 as it seemed a one size fits all answer. They are confusing
I think less people choose the question about having access to physiotherapists etc because most of us have had the allotted assessments and realise that it's a tick in the box exercise, there is no money in the system for the therapy that most of us would benefit from.
We don't tick it because we are realistic knowing it would never happen.
I also agree with others that I want to know I have access to care when I need it eg Rheumy helpline but equally want to know I have access to the right drug treatment.
These questions need to be better explained and differentiated IMHO
Nice to be asked though.
M
I only chose only one by mistake forgetting it was 3. But anyway I think that every option to choose from is vitally important. I have left many a consultation feeling let down, not being listened too in the little time allotted and ushered out before I had all my questions answered. I also waited nearly 3 months with swollen painful hands for physio and am paying privately at the moment for help. My consultant is sympathetic but trying to get an appointment to see him and not the rheumy nurse is difficult in between my yearly check up. I know the NHS is under strain, but the pain of RD and worry about the future is such that emotional support would be a welcome addition, that is why the support we all try to give each other on these forums is wonderful and one that I turn to.
I have ticked what I would like but this is unfortunately not my experience.
No 4 seems to cover everything., Info on trials, other services etc would all be encompassed in the broader question. As for trust one would assume they were qualified professionals. Personally I don't get to see the consultants that often. it's mainly the nurses and junior doctors. I wouldn't expect them to treat me any differently from anyone else, other than in terms of individual treatment needs. They hardly have time for pleasantries
Is this an April fools joke.? If only I could access treatment especially when in so much pain!
The three things that matter most to me are Numbers 2, 4, and 7.
I ticked 1, 3 and 4 but I agree that 2 and 4 seem very similar. I have no faith in my rhematology team. At my appointments I see someone else every time. They never seem to have read my notes. The appointment is always really short, they prod and poke my joints but completely ignore the person attached to the joints. I really don't like going and finding it stressful and unhelpful. I come out feeling pretty worthless.
Having the staff looking after me seeing me a a person first and treat the whole me not just the bits they deal will and the consultants talkng to each other over my different treatments as i see different people for different things. Having compassion.
I think most of us put up with the pain trying not complain. I have to say it will be nearly a year since I last saw my RA , I have already lost two jobs due to this terrible disease, I can't even get a G P app, I recently had a virus in June , then chest infection had two lots of antibiotics , been off MTX now in terrible pain, also developed in my shoulder no sleep , just agony ,started on steroids 4th day no ease yet. It's hell
