NHS Scotland wants to hear your Coeliac story
Anyone who has been diagnosed with Coeliac disease knows it’s an often long and complicated process. For most it takes years to finally get the diagnosis and there is no cure to date, meaning the only answer is to follow a completely gluten-free diet for life.
The symptoms of Coeliac disease, common ones being weight loss, recurrent stomach pain and lack of energy, can be linked to a lot of conditions, hence it is unfortunately a process of elimination. There is still not a huge amount of awareness of the disease so many people may be suffering with symptoms but not realising that they should be tested. Needless to say, there is a demand for the NHS to improve their service, especially as studies suggest that only 24% of UK Coeliacs have been clinically diagnosed.
This year NHS Scotland have been acknowledging that improvements could be made in how the disease is diagnosed, treated and followed up. They are searching for people who have been diagnosed Coeliac in the last 10 years to hear more about their experiences and gather suggestions based on how the NHS service could be improved for their benefit and the benefit of those who are yet to discover they have the disease.
Alongside organisation Coeliac UK, they have planned two patient consultation events, one in Dundee on Saturday 19th August and another in Glasgow on Saturday 2nd September. You can apply to attend, the only requirement being that you must have a clear recall of the stages of your NHS care and that you have ideas for how such care could be refined.
If these events are a success then it could lead to other similar ones being organised across the UK, giving more people an opportunity to share their stories and improve the lives of those living with Coeliac.
If you are interested in attending either of the events in Scotland, or would just like more information, call 0131 220 8342 or email [email protected] For the Dundee event you must respond by 11th August and for the Glasgow event by 25th August. A gluten free lunch will be provided and all travel expenses covered!