Today is Monday 21st May 2018.
Twitter icon
Facebook icon
RSS icon

News

 

CHANGE OF VENUE

Please note that Edinburgh Support Group have decided that they May 2018 meeting should be in The Standing Order, 62-66 George St, Edinburgh EH2 2LR at 11am on Tuesday 8th May rather than to the Undercroft Cafe.

 


PLEASE PLEASE KEEP RAISING AWARENESS 

Headaches may mean your sight is at risk. See the entry for Giant Cell Arteritis on the page 'What is PMR and what is GCA?' for more information and the warning symptoms.


Tocilizumab. NICE, the National Institute for Health and Clinical Excellence for England, has approved the use of Tocilizumab for cases of Giant Cell Arteritis. There has not been a new drug for this disease since steroids were first used 70 years ago. Thousands of patients have had no option up to now but to take high doses of steroids for several years.

We now have to request SMC (Scottish Medical Council) approve it for Scotland. 

To see the report on the trial of Tocilizumab in Giant-Cell Arteritis issued on 27th July 2017 go to  Research and clinical guidelines.

AGM Date on Friday 20th April was excellent. Talks by:

1. NHS Fife's experience of a fast track pathway for GCA by Dr. Jane H Gibson, Consultant Rheumatologist, Fife Rheumatic Diseases Unit, Kirkcaldy

2. Polymyalgia Rheumatica: Update on New Ultrasound Diagnostic Criteria by Dr. Helen E. Harris, Consultant Rheumatologist, Fife Rheumatic Diseases Unit, Kirkcaldy and Senior Lecturer (St Andrew's University)

 


Highland Group featured in the Press and Journal. Read the article HERE.


Cross Party Group at Holyrood. On 8th November the Cross Park Group (CPG) invited Dr Jane Gibson from Fife to outline her Fast Track approach to preventing blindness in suspected GCA patients. The presentation was very well received and it is being further discussed in Holyrood with a view to being rolled out to the rest of Scotland. 


Highland Group Meetings of the Highland Group have been a success why not join them. See HIGHLAND for details.


Rheuma Research Roadshow - Kirkcaldy, Fife Wednesday November 1st 2017

This "research roadshow" event brought together patients, clinicians and researchers together to find out what is happening locally and around the country, and how doctors and patients can work together to manage PMR and GCA more positively. The focus was on 'Improving Outcomes and the Patient Experience'..


 

AGM 2017

Dr Sarah Mackie Associate Clinical Professor and Honorary Consultant Rheumatologist at Leeds hospitals spoke about PMR and GCA at our AGM on Friday 24th March 2017. She is a rheumatologist in a five-year NIHR Clinician scientist Fellowship, which centres around ways of improving the diagnosis of polymyalgia rheumatica (PMR). The talk was excellent and we are looking for a speaker for next years AGM. More information will follow.


LATEST NEWSWIRE

Issue 24 (Spring 2018) was posted out on Monday 23rd April. If you want to download a copy then click HERE. The Scotland contribution can be found on page 9.

 

NEW PATIENT EXPERIENCE

There is a new story on the Patient Experience page. For previous entries please see Our PMR-GCA Stories. Please do let us have your story, which allows everyone to see just how you have found things - for everyone who has either (or both) conditions, the progress will be different but maybe someone else can get inspiration from you?


UPCOMING EVENTS

We aren't aware of anything at the moment but if you know of something that would be of interest to our members or readers of this website, please email us at info.scotland@pmrandgca.org.uk.  


FUNDRAISING!!

Do you have family or friends who are prepared to share their talents and raise funds for the charity so that we can both continue and expand our work? Maybe they are part of a community choir or orchestra or band? Perhaps they would like to skydive or undertake a challenging walk and wanted a cause?

Please do ask around and see if anyone is prepared to help. We can provide some publicity material and sponsorship forms if needed.

Either call the helpline (0300 777 5090) with your contact details and we will call you back  Or email info.scotland@pmrandgca.org.uk


We are including information in the Self Management section that we believe may be of help and interest. 

 


Donate Now Button
I regret that we are not currently set up for Charity Choice to collect Gift Aid on our behalf but if you are a taxpayer and are happy to apply this to your donation, click the link GIFT AID FORM which can then be posted to us at 7 Hamilton Place, PERTH PH1 1BB.
If you prefer to donate via BACS  please email info.scotland@pmrandgca.org.uk and we will provide the necessary details.