Research annual clinic

[DevonMichael]

This week got the chance to give some GCA patient experience input to Keele University trial, they are looking at setting up an annual clinic using a nurse at local GP surgery. The aim is to look at quality of life issues including low mood, anxiety, heart disease and thinning of bones. The pilot clinic will be evaluated and it is planned to twin track with rheumatologist work. It is to cover inflammatory arthritic conditions (including psoriatic arthritis, rheumatoid arthritis, polymyalgia rheumatica and ankylosing spondylitis).

[betty1943]

Are they needing sufferers with GCA to take part in the trial? How did you hear about it? Thank you.

[DevonMichael in reply to betty1943]

Hi Betty I heard about this through the distribution of some leaflets actually at the PMRGCAuk workshop held at Keele University. The leaflets indicated their research department was looking for Patient, Public Involvement and Engagement (PPIE) on their projects. Because it mentioned GCA I threw my hat in the ring and got invited to a meeting a few days later to input on the project (not be part of the trial!) The latter will I understand involve three GP practices and involve about 100 patients at each site to take part in annual clinic.

[betty1943 in reply to DevonMichael]

Hi Michael can you give me an address please? Is it c/o Keele University, which Dept.

[DevonMichael in reply to betty1943]

Betty I have sent the contact details to you in the message facility - just confirm received ok!

[betty1943 in reply to DevonMichael]

Thank you Michael. Received ok. I'm hoping I am winning with my GCA but feeling a bit rough at the moment but I'm hoping all will be well.

[Celtic PMRGCAuk volunteer]

That's great, DevonMichael. I'm actually about to be involved in another trial at my local hospital - a multi-centre study to do with trying to find out more about the causes of GCA and PMR, with the lead site being University of Leeds. The more research the better.

[DevonMichael in reply to Celtic]

Agreed! The more we can shine a light on the subject the greater the chance to raise awareness to both clinicians and the public and hopefully one day the root causes can become known.

[jinasc]

eprints.whiterose.ac.uk/852...

'I suddenly felt aged'

Research by Dr helen Twohig and Keel University.

[Rimmy in reply to jinasc]

Thanks this is a 'good' article - great to see that 'patient' experiences are here the focus. I am thinking this has also occurred - or at least been recognised with regard to PMR BECAUSE the 'biomedical' processes have often been inadequate anyway - or at least inadequately or well applied - so that those who found themselves with these symptoms have had to struggle through unaided. Eventually - often very 'late' in the piece a lot of us find out ourselves what we've 'got' and have had to educate our own medicos. This is really all about the importance of listening and actually believing what people say as much as it is about knowledge of the condition itself.

Thanks again for the link !

Rimmy