#AccessForAS – Campaign with Us! Write to your MP!

Help us open the door to essential healthcare during the pandemic and beyond

We need your help to put pressure on the Government to make sure that, regardless of the pandemic, essential services and care for axial SpA (AS) are still provided, like seeing a rheumatologist or physiotherapy.

Research we carried out this summer suggests tens of thousands of you have been left in limbo since the first lockdown and are struggling to get access to healthcare teams when you need them. This is having a detrimental impact on lives – nearly half of our respondents reported that their mental and general health has deteriorated during this period.

We are determined to get people with axial SpA (AS) the care they need during the pandemic and beyond. We’ve worked with the All-Party Parliamentary Group on (APPG) on Axial Spondyloarthritis to publish new recommendations including measures rheumatology departments can adopt without needing significant extra investment or needing to reorganise services.

You can help now, by writing to your MP and supporting our call the Government to step in to ensure that healthcare commissioners and providers maintain a minimum standard of services.

Download our template letter to write to your MP

Find your MP and their address using the UK Parliament website here 

Click here to read the Minimum Standards of Services Specification

If you live in Wales, Scotland or Northern Ireland, please email jill@nass.co.uk.

We’ve been left in limbo

Gemma, Emma and Charley have not seen or spoken to a rheumatologist since lockdown began.

Emma Wardrope

During the pandemic, I’ve been left in limbo. My appointment to see the rheumatologist in April was cancelled and I’ve heard nothing since then. It’s concerning, because I remember the rheumatologist saying regular contact is important when I was first diagnosed. You worry about the damage that’s being done. You feel it’s a postcode lottery of access. It’s very frustrating.

Gemma Shepherd

I was diagnosed with axial SpA in December, but I haven’t spoken to or seen my rheumatologist since pre-Covid. I only talk to the nurse on the phone. Physio has been a complete no-go. I’ve felt such a sense of isolation from the lack of information and not knowing – and the pain is getting worse. I ended up calling the hospital and a nurse taught me how to inject myself, but that’s the only appointment I’ve had in person. It’s just been phone calls since then and it’s still not working too well.

Charley Hullah

I haven’t seen my rheumatology team since November. They’re pretty much non-existent – you can’t get through to them. I’ve managed to speak to the nurse once in all this time. I feel like I’ve been forgotten. I’ve been having side effects and it’s stressful. It’s not a good feeling to be on a medication that’s intense and lowers my immune system and not to have contact with a rheumatologist or doctor about the risk that poses or how I should manage my condition during a pandemic.

Let’s change this together

Help us get attention by joining our call on the Government to step in to ensure that healthcare commissioners and providers maintain a minimum standard of services, providing face-to-face care for the most urgent cases, as well as telephone and digital access where clinics have reduced capacity and social distancing.

Click here to read the Minimum Standards of Services Specification.

#AccessForAS