Lyme patients are undoubtedly one of the most marginalized groups of patients of our generation. The lack of Lyme disease awareness amongst GPs and health care practitioners has left many of us undiagnosed, under-treated or misdiagnosed for long periods of time. To add to this, we often hear of patients being belittled or having their concerns ignored.
Whilst we can’t bring about change overnight, one thing we can do is contact the Care Quality Commission (CQC) – the independent regulator of health and adult social care in England.
Their job is to make sure health and social care services provide people with safe, high-quality care and to encourage care services to improve.
From the 14th-18th November 2016, the CQC are running an #InvisibleConditions campaign and on 14th November, they will be featuring Lyme disease.
Nearly one in three people in England have a long-term condition, and many of these conditions, including Lyme disease are ‘invisible’ or not easily noticed by someone else.
If you have an invisible or long-term condition, the CQC want you to tell them about the care you are receiving, good or bad. They plan to use the information to help them decide where and what to inspect. Sharing your experiences could help prevent someone else receiving poor care in the future.
So how can you get involved?
You can tweet @CareQualityComm using the hashtag #InvisibleConditions or reach out to them via Facebook @CareQualityCommission.
What should you write?
We encourage you to write short, sharp points about your experiences.
If you contact them through their site try to keep this to a max of 500 words, including facts only. For example: let them know that your doctor misdiagnosed you with ME, or let them know your GP withheld a positive ELISA test – don’t write ‘my doctor is the worst’ or ‘My GP is a liar’.
We equally encourage you to tell the CQC about any positive experiences you may have had.
What do I need to consider?
If you are providing feedback via their website you will be asked to name the service and provide its location. You will also be asked for the time period that your concerns cover.
As with many Lyme patients you are likely to have more than one concern regarding your care. We suggest that you provide feedback regarding the most troubling experience you have had or you complete the form multiple times for each separate issue. It’s important that we point out, this campaign is about sharing feedback and experiences – not complaining.
As a final note – please share this information with your network of family, friends or co-workers. You may be able to reach patients with other invisible conditions who may not know about the campaign. If there is one thing us Lyme patients do best, it’s raising awareness. Go team!