Pembrokeshire Lupus Support Group – News and Views entry – September 2018
What a first year we have had! Our very first meeting was held last September and we’ve grown so much since then. I have been in contact with over 40 people now, most have lupus or are pending diagnosis and a few are family members who are trying to support loved ones with the illness.
We have had 7 meetings, with our last held in Narberth having the biggest turn out yet.
Our meetings have been concentrating on our campaign to access expert lupus care and the Lupus Centres of Excellence which are all in England. It has become very apparent that despite our local hospital struggling to recruit Consultants in a wide number of roles including Rheumatology, (mainly due to the future of the hospital being uncertain with plans to downgrade it and build a new hospital) and struggling with the high demand on Rheumatology services, they continue to deny us NHS referrals elsewhere, both inside Wales and over the border to England. They are discharging many people with lupus too, to the sole care of their GPs. This is causing many serious issues for patients with lupus in the Hywel Dda UHB catchment.
I have been corresponding with my MP, my AM, the Secretary of State for Health and Hywel Dda, with the assistance of Kevin Weston, for some time but to no avail. We therefore launched our petition, to raise awareness of our campaign in July and it is doing very well.
Please support our campaign by signing the petition.
I have been blown away by the support that our members are giving to each other and the instant bond that we have formed. We work well together. We are a group of strong, determined people who have united and will not give up until we have changed things for the better. I have no doubt that the group will continue to flourish.
Anyone interested in joining our group, please contact me, Wendy Diment at email@example.com or on 07920 052514