Rights and responsibilities

Managing chronic conditions such as rheumatoid arthritis is all about teamwork. Patients, families, healthcare professionals and policy makers must all work together to ensure a better outcome for everyone. The National Rheumatoid Arthritis Society is developing a new Responsibility Deal for those affected by rheumatoid arthritis and those who make the decisions about the services provided.

We hope this Responsibility Deal will emphasise that we all have a responsibility to help foster improved partnerships between everyone involved.

We are in the process of conducting a survey of those with an interest in rheumatoid arthritis to find out their views... your views. To take part in the survey, please visit surveymonkey.com/s/nras_deal . The results of the study, incorporated into the new Responsibility Deal, will be published to coincide with World Arthritis Day on the 12th October.

Your opinion counts, so make sure it is heard and please take part in the survey.

Thank you!

[sylvi]

I did make a start on the survey,but here i am showing my ignorance,when i got past what colour people then it wanted written answers and couldn't understand what was required of me. I am only a woman with ra i don't have any qualifications so i felt i couldn't add to the survey. I want straight questions to be asked. sorry.

[Hidden]

Hi! Sylvi, I am sorry you are not happy with the questions. The reason why we did them in this format was to allow for more meaningful answers rather than just tick-box questions. Your opinion is as valid as anyone's and I'm sure you have a lot to add to the discussion, so if you are able to write even just brief comments then it would be very helpful.

[Hobbles]

Hi, filled in the questionnaire , look forward to seeing the results, good luck

[Hidden in reply to Hobbles]

Many thanks for that. As I say we hope to get them published in time for World Arthritis Day.

[Hidden]

Hi

Filled in the questionnaire, also looking forward to the results.

Mary

[Hidden in reply to Hidden]

Thank you. Our government affairs chap who is running the study will be happy.

[sheenerweener]

filled it in not sure i done it right but had a good go

[Hidden in reply to sheenerweener]

Thanks. The advantage of a survey like this is that there is no wrong or right answer, it is down to opinion. the clever people who will be analyzing the responses will be able to draw on what you've said to build up a bigger picture.

[Hidden]

I've completed the survey, I hope the replies are what was required and useful.

[Hidden in reply to Hidden]

Thanks for that. All replies are useful as they help us to get an idea of what people are thinking.

[RichC]

Filled in .

However i think before we even talk about responsibilities of the RA sufferer, there are things that need to be addressed.

The ability to be involved in your own treatment, to have an agreed care plan , to have access to an RA Nurse at any time, to have comprehensive information supplied by the NHS about the condition and it's possible affects both short term and long term, that NICE Guidelines are followed, that rights under the NHS Constitution are not ignored...etc etc etc.

Any rights and responsibilities agreement will be just that , an agreement or good practice.There needs to be a robust way to monitor and a robust way to deal with health Authorities who deviate from this.

Bear in mind that when we talk about "rights" , this normally comes with some means of enforcing those rights.

R

[Hidden in reply to RichC]

Well said Rich, my thoughts exactly.

Paula x

[Hidden in reply to Hidden]

I hope you echoed those thoughts in the survey. Every response is of value so if not then please do so. Thanks.

[Hidden in reply to RichC]

You make some very good points Rich and I hope you included them in your response. The survey is not just looking at the responsibility of the patient but also the responsibility of the healthcare professionals and policy makers, the responsibility they have to provide the services you noted. We hope that the responsibility deal will help keep RA at the forefront of peoples' minds and allow those with RA to say to those with authority "we're doing our bit now you do yours."

[Hidden]

Yes I filled it in and made the same point - thanks Rich. Also is any oranisation tackling the National shortage of rheumatologists and of specialist nurses I wonder? Tilda

[Hidden in reply to Hidden]

Many thanks for that Tilda and of course the lack of rheumatology specialists is a concern for many of us. NRAS are always trying lobby for better access to services for those with RA and this includes trying to make sure there are sufficient services available.

[Hidden]

Thanks Andrew. I don't really know enough about this yet but it seems to me that there aren't enough medical students who want to become rheumatologists in Britain. While I can see that it must be one of the harder areas of medicine to train in I also would have thought that could be made a more attractive feature to the brighter young students - i.e a real challenge to get their brains around. I saw a video recently where a rheumatologist described his fellow professionals as being "the true Sherlock Holmes's of medicine" and having been in this RA place for 18 very preoccupying months now I can see exactly what he meant. Perhaps some more work needs to go into recruiting the good students and trainee nurses into rheumatology? Tilda

[Hidden in reply to Hidden]

I can see what he means about rheumatologists being the Sherlock Holmes of the medical world. I think there are probably a lot more unknowns in rheumatology than other medical specialties so a lot more investigative work needs to be conducted.

[Hidden]

Yes but that surely makes it a more interesting specialism than other well-trodden areas too Andrew? I'm a research led artist and love following scents with my nose so I imagine that those studying science/ medicine would find this a more rewarding area than say gynaecology (sp)? But I'm obviously wrong here - just hoping some of the brainier med students would see this as the more exciting route to take if encouraged by a recruitment campaign perhaps? TT

[Hidden in reply to Hidden]

I think the factors that determine why medical students choose whatever specialty they do varies between students - it depends on their experience and their personality. I don't necessarily see it as needing the brainier students (they're all fairly clever) but rather students of the right mindset. Highlighting the challenging nature of rheumatology could be good way to a encourage entrants, almost in the same way that GCHQ try to encourage the inquisitive mathematicians to sign up.

[Hidden]

Yes exactly Andrew! I have a friend who is a GP and sheays that these would-be specialists usually go for the areas set in stone such as gynae which don't change much - unlike GPs who have to keep their work practice up to scratch by knowing a little about a lot if you know what I mean?

Relating this to your request that we complete this survey - I feel strongly that by changing the public perception (if they even have one) of RA and related conditions - this will filter down to medical students too who will see rheumatology as the area still to be conquered perhaps?

But I also think you're right - it takes a special type of person to specialise in an area where there is so much pain and suffering and no definative cure as yet. But I'm sure those special ones exist so if RA is portrayed as the final frontier a bit more then perhaps these special doctors will appear more in currently beleagured rheumatology departments. Tilda

[Hidden in reply to Hidden]

I don't think the public has a perception of rheumatoid arthritis. They have a perception of 'arthritis' and that perception is completely inaccurate for RA. This is what we need to change and is why surveys like this are important as they help raise the awareness of RA and identify it as being a separate condition.

[SootyB in reply to Hidden]

I don't think that the public as a whole quite understand the difference between OA and RA. We've started sending pre-assessment questionnaires out to patients before they attend for the first time, and the number of them who say that they have RA, and when questioned don't have any type of inflammatory arthritis, is amazing.

Sara x

[Hidden in reply to SootyB]

That is absolutely correct. There is a general perception of 'arthritis' and that perception is that it's an old person's disease brought on by a lifetime of wear and tear.

We need to keep getting the message out there that rheumatoid arthritis is nothing to do with age, it is an auto-immune condition.