"Doctor lovely, Connect Health terrible "

I have been treated for Undifferentiated Connective Tissue Disorder (UCTD) since September 2019, and my treatment has been via Connect Health on the NHS.

The service from Connect Health has been astonishingly poor, with the shining exception of the doctor I see in person 1-2 times per year. She has been consistently helpful, sympathetic and is a great rheumatologist who I would recommend to anyone.

Sadly, even her great treatment can’t make up for how bad Connect Health has been. I summarise the 3 biggest problems below.

1. There appears to be no communication between Connect Health and Herts Valleys NHS Trust. I was not actually told after my first appointment that I was being treated via Connect Health - indeed, most staff at St Albans City Hospital seem entirely unaware this contract exists, or that someone with an autoimmune disease might be under Connect Health (CH) care. This resulted in a farcical few weeks where I rang the hospital regarding future appointments and tests, and was told the hospital had not seen me since 2012! Why are appointments via CH at the hospital apparently going unrecorded by the hospital? Why are patients not being told we need to contact CH, not the hospital, regarding our care?

2. CH are poor at updating my GP about what is going on with my care. They often do not send them my test results. When they do send them, they often send them to my old GP, where I have made clear to them I am no longer registered. When I ring CH to ask for my (routine, regular) test results, they often refuse to give me them or even to read them out to me on the phone, saying I need a doctor to interpret them. I am a 26 year old adult woman who has these tests twice a year at least. We are testing for the same things each time and I understand what the results mean by now. It is deeply patronising that the powers that be at CH will not provide me with my own healthcare data. I know that other services provide this, as my husband also has an autoimmune disease that requires him to undergo regular blood tests, and he is sent his results directly after each one without issue.

3. CH often seem confused about who I am and intermittently can’t find my records when I ring them up. They are also bad at booking my appointments - in summer 2021 I was told I would not be seen by my Dr until early 2022. In September 2021, I got a letter from the NHS asking why I had missed my appointment that week. I had missed it because CH had made me one without telling me! The letter I was then sent about my rescheduled appointment in Feb 2022 had the wrong time on it, so Watford Hospital were very confused when I turned up. Telephone appointments during Covid were also of poor quality - I was allocated several very nice physios to speak to who were, rightly, honest that they couldn’t comment on UCTD because they are not rheumatologists. While this is not their fault, it meant the appointments became pointless chats about my health with some nice strangers!