PMR-GCA Scotland

Support for Polymyalgia and Giant Cell Arteritis Sufferers in Scotland

PMR-GCA Scotland have been asked by the Scottish Government to help them to improve PIP Assessments

The Scottish Government is planning to be responsible for the Personal Independence Payment (PIP) from 2022. The new service will be called Adult Disability Payment (ADP).

“We are looking for people who have experience of PIP Assessments to take part in research this Dec and Jan 2021.

“We want to show you the design for the new service, so we can get your feedback. We want to find out if our design is as good as it can be, and what we can do to make it better. This would be a telephone or video interview, lasting approximately 1 and a half hours.

“Because of this, it’s very important we speak to people that have experience of PIP assessments. Whether it has been for themselves, or helping support others.

If you are interested, please contact the organisers at:

socialsecurity.userresearch@gov.scot

ZOOM MEETINGS

Watch this space: Next zoom meeting scheduled for Saturday 16th January 2021.

Following a couple of successful regional zoom meetings, the charity held 3 Autumn meetings by Zoom.

The dates were:

  1. Wednesday 16th September at 11am Subject of talk “GCA – the symptoms and the Fast Track”.
  2. Friday 16th October at 11am– “Tocilizumab (TCZ) – new hope”.
  3. Monday 16th November at 11am on “Adrenal insufficiency”.

Recordings of the first 2 (which do NOT cover the discussions afterwards) can be accessed by clicking the date below:

16th September Use Passcode: kUCsM%96

16th October Use Passcode: QMJ@M0mj

16th November was not recorded but see Dr Sarah Mackie’s document here

Hints, Tips and FAQs are now available on the website (see tabs at top).

Do you have any additional questions that relate to the conditions? If so, please send to Secretary@PMRGCAScotland.com. We will not include them all but will pick out the questions that affect most people. Watch this space.

ANNUAL MEETING with AGM 2021

The trustees are currently reviewing plans for Annual Meeting with AGM in March 2021. Current plans are for Dundee on Friday 19th March 2021 but this venue will probably change.

More details will follow.

Prednisolone doses in the event of infection

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 coronavirus infection. The document can be found here.

WINTER NEWSLETTER

Issue 32 (Winter 2020) of NewsWire is being produced. Should be available by middle of December.

 

PAST NEWSLETTERS

Copies of the last few newsletters are available:

2020 August Issue 31, April Issue 30

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

GCA GUIDELINES for patients

This summary based on the BSR GCA guidelines (see below) was written by Sarah Mackie, Keith Slater and Lorna Neill.

It is a short summary of the new British Society for Rheumatology guidelines on giant cell arteritis written for patients.
The authors of the guidelines, a group of leading medical experts on the condition together with patient representatives, divided their report into two sections: general principles and key recommendations for use by patients.

The summary can be found here

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.