Informal Coffee and Chat Meetings
Lupus can be a complicated illness and needs to be managed carefully by health professionals and also by patients themselves – this is where a support group can help. Our aim is to help, as friends and fellow lupus patients. We are not medically trained but have the best training ever: we are going through the same worries and frustrations as you,
We have regular ‘coffee and chat’ mornings in Cambridge, Ely, Peterborough and St Ives. If the demand is there, we can extend this network to other towns in the county.
They are an ideal opportunity for people with lupus to meet others and to find out more about the condition. As lupus patients ourselves, we can understand the issues that challenge a person with lupus. Our groups provide participants with an opportunity to receive introductory information about lupus, encourage the expression of concerns, provide an opportunity to share experiences, encourage and support positive coping strategies, and emphasise the importance of medical treatment. The medical professionals provide diagnosis and treatment for lupus, but we believe the best way to learn how to manage your life when you have lupus, is to talk to other people who have learnt to live WITH lupus rather than fighting AGAINST it.
Our get-togethers are held on Saturday mornings – please contact us or see our events page for dates and venues of future meetings. We meet at 11am and are usually there for up to two hours. They are ’drop-in’ sessions— you can stay for as short or long a time as you like. The venues are pubs, hotels and garden centres which provide very relaxed atmospheres with easy access and parking. You don’t have to let us know you are coming, just turn up – we would be delighted to see you.
Contact with Medical Professionals
We have close links with the lupus medical teams at Addenbrooke’s, Hinchingbrooke and Peterborough Hospitals and we contact them regularly to update them on our work. Our close links help us to find expert speakers for our open meetings and information events. We can also publicise events arranged by the hospitals.
We have telephone contacts who have attended a LUPUS UK Contacts Course; these people have the skills and knowledge to help someone who may be feeling isolated, worried or confused. We also offer a contact via email service. Please use the contact us section for more information.
We hold an annual Information Afternoon along with our Annual General Meeting. The formal part of these meetings doesn’t take long and they are open to everyone. We have medical talks from expert health professionals covering many aspects of the physical and psychological effects of living with a long term health condition like lupus.
We also have larger information events: Our event in 2016 attracted a near capacity audience of 300 and was held at the Wellcome Trust Conference Centre in Hinxton, Cambridge. We had speakers covering topics including news on the latest research and managing a lupus flare. See our events page or our Facebook page for more details.
We produce four editions per year, mainly via email, but we do have paper copies too. Our newsletter extends and publicises our work and has a very wide circulation which includes other regional groups, the medical teams at the three large hospitals in our area as well as our members and supporters.
The newsletter includes dates and details of our events, the latest lupus research news, articles written by lupus patients and health professionals, a young lupus patient page, health and beauty tips, healthy recipes and much more – you can download a copy of the latest issue here.
To download previous issues, click the cover images below:
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We recognise the importance of social media and we have a very active Facebook page. We have three administrators of the page so that information can be passed on quickly – usually daily.
Our page advertises our events, passes on information about research, gives tips about coping with lupus and of course it’s a quick and easy way to contact us.
We have an extensive email database of members and supporters from across the region. Using the database enables us to contact people quickly and cost effectively to publicise our meetings and events. Please contact us if you would like us to add your details to our database for notifications of future events and copies of our newsletter. Our database is secure and has recently undergone GDPR. Your details will never be passed to any third party.