EULAR survey - Your help is needed!

[EmmaS-NRAS]

EULAR (European League Against Rheumatism) have recently published 10 recommendations for the role of the nurse in the management of inflamatory arthritis. They are now keen to obtain the views of patients across the EU regarding these recommendations. In particular, the survey looks at the need for nursing care as differences exist in the availability of nursing care across Europe. Even if you do not have access to a rheumatolgy nurse, EULAR would especially like to hear from you!

Below is a letter explaining the background to the research and immediately below is a link to the short 15 minute survey. This survey is just for patients in the EU, so apologies if you are not from one of the members states. Your answers will go towards capturing the voice of the people living with RA so please consider completing the questionnaire.

Survey: surveymonkey.com/s/Q_patients

With gratetful thanks in advance for your time.

Best wishes,

Emma

Membership Supervisor

NRAS

0.Dear Sir/ Madam,

The European League Against Rheumatism (EULAR) is an association of Patient organisations, Rheumatology scientific societies and Rheumatology Health Professional organisations. Its aim is to improve the quality of care for patients with rheumatic diseases across Europe.

In 2011, 10 recommendations for the role of the nurse in the management of inflammatory arthritis -a term used for rheumatoid arthritis, ankylosing spondylitis or psoriatic arthritis- have been developed by a EULAR Task Force consisting of patients, rheumatologists, nurses and health professionals from across Europe [1].

If you have any of these types of inflammatory arthritis, we would like to know your views about these recommendations and the need for nursing care. To date, differences exist in the availability of nursing care for patients with rheumatic diseases across Europe. Even if you do not currently have easy or any access to a rheumatology nurse, your views are especially important to us.

In completing the questionnaire you will help us to explore some specific questions.

We particularly want to know:

1. If you agree or disagree with each of the recommendations. If you disagree with any, why is this?

2. If you are currently receiving care described in each recommendation. If you do not receive that care, why do you think this is?

It is important that as many patients from as many European countries as possible fill in the questionnaire. You received a link to the questionnaire in SurveyMonkey. If you do not have access to the Internet, please ask your rheumatologist if you can access the Internet in his/her practice or department or ask at your local library (where the staff will help you) Please fill in the questionnaire; it will take about 15 minutes.

1.Please click the link and select the questionnaire for the Patients.

surveymonkey.com/s/Q_patients

2. Choose your own language. The questionnaire for your own language will appear. If you do not have rheumatoid arthritis, ankylosing spondylitis or psoriatic arthritis, please do not fill in the questionnaire.

a.First, please answer some general questions about you.

b.Next, for each recommendation: choose a number indicating how much you agree or disagree with it. For example 0 means you do not agree at all and 10 means you completely agree. If you do not or only partly agree with the recommendation, you may click on one or more of the reasons in the prefilled list. If you cannot find a reason that fits from the prefilled list you can write down any other reason.

c.Finally, for each recommendation: choose a number indicating the level to which you receive the care stated in that recommendation. In case you do not or only partly receive that type of care, you may click on one or more of the reasons in the prefilled list. If you cannot find a reason that fits from the prefilled list you can write down any other reason.

Thank you for your time.

Kind regards.

Sarah Ryan

Nurse Consultant Rheumatology, Staffordshire and Stoke on Trent Partnership

1.van Eijk-Hustings Y, van Tubergen A, Boström C, Braychenko E, Buss B, Felix J, et al. EULAR recommendations for the role of the nurse in the management of chronic infl ammatory arthritis. Ann Rheum Dis. 2012;71 (13-19).

[lynn-bel]

Hi, I just did this. Hope it helps!

When I think about the issues in order to answer, I realise how little help we get. Certainly we should have more than 10 minutes twice a year with our rheumy consultant and the nurse is never reachable and too busy to spend much time to help. There are no discussions, no indepth answers to my queries and sometimes a look at me as if I'm crazy!! I do think a lot of it is there arent enough RA consultants / nurses and they are all much too busy.

Lynn

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I completed it too and it was like another world having never had a rheumy nurse and only very limited time with a rheumuatologist. Yes rheumatology has to be one of the most overstretched areas of the NHS.

It would be interesting to know why consultants went into it in the first place actually? It must be one of the more depressing areas of medicine to study because you would have to witness so much pain and suffering and only some of it curable. But I would have thought it would be very interesting too because it's really complex and every case is slightly different and when the drugs work it must feel all the more satisfying? Any consultant reading this do let us know why you chose this area of medicine please! Tilda

[asasmum]

Just completed it. Hope it helps!

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Due to the lack of rheumatologist in the NHS I have to see mine privately, one I saw on the NHS didn't have a clue as he was a consultant of geriatrics, general medecine & rheumatology! Jack of all trades but master of none!