On 12 March 2014 NASS launched our 'AS it is' campaign in Wales.
The aim was to get a higher standard of care for people with AS in Wales.
AS it is for people with AS today......
• diagnosis times for AS are still hugely inadequate, with the average time until diagnosis still being 8.5 years
• AS patients are not getting appropriate access to physiotherapy services
• AS often affects people's ability to work, and yet they are not getting access to employment support
• People with AS are not satisfied with the support they are getting during flare ups
The campaign was launched at the Senedd to raise awareness of ankylosing spondylitis (AS) and its impact on patients in Wales.
There was a reception, which was kindly hosted by Janice Gregory, AM, who is familiar with the issues from her work with constituents.
We were delighted that the Health Minister, Professor Mark Drakeford and Dr Zoe McLaren of Betsi Cadwaladr University Health Board spoke, along with Debbie Cook, NASS Director, Grant Poiner, NASS Trustee and Tudur Philips, S4C presenter and AS
A short film made by Huw Irranca-Davies, MP expressing his support for NASS and the campaign and telling his own personal AS journey, was also broadcast. Watch the film here.
We are proud to announce that 28 Assembly Members (almost half of all AM's) attended, including 7 Government Ministers (70% of the cabinet) and 1 Deputy Minister. Thank you all for attending and signing the pledge.
Mark Drakeford AM, Minister for Health and Social Services, Cardiff West (Lab)
David Rees AM, Chair of Health Committee, Aberavon (Lab)
Darren Millar AM, Shadow Health Minister, Clwyd West (Con)
Janice Gregory AM, Government Whip, Ogmore (Lab)
Edwina Hart AM, Minister for Economy, Science and Transport, Gower
Jeff Cuthbert AM Minister for Communities and Tackling Poverty, Caerffili
Alun Davies AM, Minister for Natural Resources and Food, Blaenau Gwent
Ken Skates AM, Deputy Minister for Skills, Clwyd South
Carl Sergeant AM, Minister for Housing and Regeneration, Alyn and Deeside
Lesley Griffiths AM, Minister for Local Government and Government Business, Wrexham
John Griffiths AM, Minister for Culture and Sport, Newport East
Elin Jones AM Shadow Health Minister, Ceredigion (Plaid)
Mike Hedges AM, Swansea East (Lab)
Gwyn Price AM, Islwyn (Lab)
Byron Davies AM, South Wales West (Con)
Sandy Mewies AM, Delyn (Lab)
Rhodri Glyn Thomas AM, Carmarthen East and Dinefwr (Plaid)
Mark Isherwood AM, North Wales (Con)
Ann Jones AM, Vale of Clwyd (Lab)
Nick Ramsey AM, Monmouth (Con)
Janet Finch Saunders AM, Aberconwy (Con)
Rebecca Evans AM, Mid and West Wales (Lab)
Rhun ap Iowerth AM, Anglesey (Plaid)
Julie James AM, Swansea West (Lab)
Julie Morgan AM Cardiff North (Lab)
Keith Davies AM, Llanelli, (Lab)
Antoinette Sandbach AM North Wales (Con)
Eluned Parrott AM, South Wales Central (Lab)
Our thanks also go to: Grant Duncan, Deputy Medical Director for the Welsh Government; Professor Andrew Davies, Chair ABMU Local Health Board; Mary Cowen, Director Arthritis Care Wales; Philippa Ford, Policy Officer for Wales, Chartered Society for Physiotherapy; and Nicola Davis-Job, Acting Associate Director, RCN Wales who attended and showed their support.
Thanks also to the NASS Trustees who travelled to attend the event; Roger Stevens, Dr Richard Jacoby, Ruth Miller and Grant Poiner.
The reception was a great opportunity to raise awareness of AS and we are very grateful to those NASS members who volunteered to come along and speak to their elected representatives about their condition. If you live in Wales do feel you can contact your local AM and thank them for their support. You can find details on how to contact your AM on the Senedd website.
Following on from the event:
• The Welsh government issued a press release
• Heno (a S4C) programme included interviews with Mark Drakeford, Health Minister and Tudur Phillips. The item starts 13 minutes into the programme.
• Radio interviews were recorded
• Massive response on social media via Twitter and Facebook
• AS was discussed, particularly diagnosis times and access to physiotherapy, at the Welsh Assembly Health & Social Questions on 19 March.