PMR GCA Scotland

Support for Polymyalgia and Giant Cell Arteritis Sufferers in Scotland

Help wanted

Dr Sarah Mackie is an established friend and supporter of the UK charities and she has compiled a leaflet about prednisolone doses in the event of corona virus infection. The document can be found here.


HELP WANTED FOR SURVEY

Two Health Psychology masters students from the University of Aberdeen and are currently looking for people to answer questions exploring treatment burden. They are looking for adults with one or more long-term health conditions to take part in a survey evaluating the effectiveness of questionnaires on burden of treatment. The questionnaire will take about 30 minutes to complete and there is the option for individuals to enter a prize draw for a £40 Amazon voucher. 

The study is accessible on the link below and more information on the project, including the study supervisor’s contact details, are on the first page. Link is http://tiny.cc/abdn.

SPRING NEWSLETTER

Issue 30 (Spring 2020) of NewsWire has been posted and is available as a download  HERE. Paper copies were posted on Thursday 30th April. If your copy has not arrived yet, please email Secretary@pmrgcascotland.com.

AGM 2020 – Held by email and post

The 2020 Annual General Meeting of PMR-GCA Scotland was held at the email and post on Friday 20th March 2020.

Following the delay of the conference planned for the Queens Hotel Dundee on Friday 20th March 2020, the Trustees decided to hold the AGM by email and post. The secretary contacted by email or post, the people planning to attend the AGM to inform them of the postponement of the Conference and the new plan for the AGM. The Secretary also contacted all members with a valid email address to notify them of the plan. The contacts were asked to vote on the AGM resolutions by email or post. 50 replies were received. Thank you to all you contributed.
We have decided to delay the conference for a year and hope that life has returned to normal by then. The date is Friday 19th March 2021 in Queens Hotel Dundee. More details will follow in due course. 



NHS NATIONAL SERVICES SCOTLAND Request

GCA is classified as a Rare Disease by the NHS. Please read the invitation to take part in the research study described below.

CONCORD (Coordinated Care of Rare Diseases) is a research study looking at how care of people with rare diseases is coordinated in the UK and how patients, families and healthcare professionals who treat rare diseases would like care to be coordinated.

The research team are recruiting patients, parents and carers for and are keen to hear a Scottish perspective. Please see here for details.

Note that it is possible that this study has closed. It is not obvious from the link but there is a contact available if you want to try to join.

 

PAST NEWSLETTERS

Copies of the last few newsletters are available:

2019 December Issue 29, August  Issue 28, April Issue 27

2018 December Issue 26, August Issue 25, April Issue 24

2017 December Issue 23, August Issue 22, April Issue 21

NEW GCA GUIDELINES 2020

Giant cell arteritis affects the blood supply to the scalp, jaw muscles or the back of the eye. If left untreated, it can lead to blindness or stroke. Our updated guideline on its treatment ensures clinicians have the latest information about diagnosis and treatment, bringing the latest peer-reviewed evidence up-to-date and supporting clinicians in providing the best treatment for people with this disease. Our guidelines team worked with over 35 national and international experts in the field, including rheumatologists, GPs, ophthalmologists and patients, to update the guideline. This involved a rigorous process, using a framework for evidence appraisal called GRADE, coupled with our BSR Guidelines Protocol, which is endorsed by NICE. Guideline co-lead Dr Sarah Mackie, Associate Clinical Professor in Vascular Rheumatology at the University of Leeds, co-led the development of the guideline. She explains: “The way patients with suspected GCA have been assessed and treated has been variable across the UK. Giant cell arteritis is very time critical; a delay in starting high-dose steroid treatment can cause blindness, but this same treatment can also cause serious side-effects, so this is not a matter to be taken lightly. “We recommend that all patients are referred to a specialist who can see them promptly – on the same working day if possible and in all cases within three working days.”

TOCILIZUMAB latest news…

The SMC (Scottish Medical Consortium) announced on Monday 10th September 2018, their approval for the use of tocilizumab (RoActemra®) for restricted use within NHSScotland. This drug may be used in the treatment of Giant Cell Arteritis (GCA) in adult patients subject to a 12 month clinical stopping rule. This is the first new drug for GCA 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. The relevant Detailed Advice Document can be found here and a link to the Decision Explained public information summary can be found here . The charity’s submission to the SMC can be found here. The charity has been thanked for the considerable time and effort taken to capture the patient and carer perspective during the submission process.  We particularly thank Lorna for all her efforts and we welcome this decision. To see the report on the trial of Tocilizumab in Giant-Cell Arteritis issued on 27th July 2017 go to  Research and clinical guidelines.