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Campaigning for better care and support

Post diagnosis support

Effective and tailored support after diagnosis is really important for people with coeliac disease. Many people are happy managing their own treatment whilst others require more frequent checkups and support in maintaining their gluten-free diet. Whilst everyone is different, we advocate a system of post diagnosis care where:

  • each patient can have a regular review to ensure any associated conditions or complications are treated appropriately
  • each patient is supported in managing their gluten-free diet
  • healthcare professionals are aware of complications arising from coeliac disease when patients present symptoms 
  • vulnerable patients are given extra support during the transition from being diagnosed to self managing their own treatment.

We are working to achieve these aims by influencing the development and implementation of national care guidelines, lobbying key decision makers and building a coalition of organisations and supporters to pressure organisations to change their behaviour.

With the power over NHS budgets in England devolved down to a local level, patients and the public should have a greater influence over decisions on the funding for support mechanisms.

Model for pharmacy led supply of gluten-free food

In recent years there have been several areas of the UK that have run trial gluten-free prescribing schemes led by pharmacists. Following a successful trial in Scotland, the scheme was adopted as a permanent service within NHS Scotland from 1 October 2015. This means patients have been able to receive their gluten-free food on prescription from pharmacies without the need to see their GP.

One of our campaigns is to encourage the NHS commissioning groups, as well as the Welsh government, to look at taking up this type of scheme. So far the trials all point towards positive patient feedback as well as a saving of GP time. 

Find out more about why we think a pharmacy supply scheme could work.

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