Ms Olga Wehrly:

I echo what the others said. With something like ADHD, it can take up to 60 years for people to get a diagnosis, especially women because they present quite differently from men. We are used to masking in society as it is, getting on with it and putting a brave face on things. I got fobbed off by GPs for many years in trying to access an ADHD diagnosis because it was kind of seen as some faddy American thing. I was told, "Sure, you do not need that; you look fine." With EDS as well, there is definitely an element of medical gaslighting because people are presenting with all these random, chronic issues that are not acute. You are not at death's door but there are niggly things that kind of are fine but kind of not. You are in and out to the GP all the time.

If I were to ask for three actions that would help, the first would be to have a register or database, as discussed earlier, from which people can take statistics as to who has what in this country. If we are not being measured, there is no way of knowing how we are progressing. It seems like a baseline requirement to have a register. Second, GPs are usually our first port of call and they are amazing, but their knowledge relates to general practice. With EDS, we call ourselves zebras because a zebra is the emblem of rare diseases. When doctors are in training, the phrase "Hear hooves, think horses" is often used because, generally, one should not assume somebody has the rarest disease because that is statistically unlikely. By and large, because of that, the exceptions, like us, may fall through the cracks. It would be helpful if GP knowledge were updated every so often. I find medical knowledge of EDS and ADHD has really increased in the past while. In the case of long Covid, however, I am still seeing people in the support groups whose GPs are dismissing them or who have had no access to apply to long Covid clinics because the GP is not paying to attention to information on it or may not even believe in it.

The third action would be around localised access. Obviously, it is not suitable for everybody but our health centres could be a really good resource. I know from personal experience that staffing is a huge issue but it would be great for people to be able to go to their public health nurse rather than having to book lots of doctors appointments when, for example, they want to check side effects of medicine and link in on a continuing basis. It can be exhausting for us to clog up the system and drain it for everyone else. There has to be an easier way to streamline things.