ADHD medication Part two: Getting rediagnosed and the ECG debacle.

In my previous post, I talked about being diagnosed and my first experience of taking ADHD medication. As well as the reasons why I was taken off of the medication. With this post, I am going to talk more about being put on my current medication and the nightmare process that I had to go through.

The story actually starts, before I was told that I hadn’t had a heart attack. The first I heard about the shortage of ADHD medication was in the autumn of 2023. According to the UK Government, the cause was down to a number of issues, including manufacturing issues and an increase in global demand. At the time, it was estimated that supply would improve around April or May.

I had been taken off of the ADHD medication in October 2022, and by the time the NHS decided to look at my case, it was December 2023, and it wasn’t until January 2024, that I got the confirmation that I had not had a heart attack. So in total of almost 15 months. Which is frustrating, to say the least. Not only was the diagnosis incorrect, but in many ways I feel like I lost 15 months of potential. My fellowship project was heavily affected by my ADHD, and whilst I still got the final grade I wanted from my master’s degree, I wonder what my potential could have been, had I not been taken off the tablets.

After being told I had not had a heart attack, I made the big mistake of not instantly talking to my doctor, about being put back onto tablets. The main reason is because of the shortage of ADHD medication in the UK. So I waited until April.

When I contacted my surgery, I got the shocking news, that Medway NHS wasn’t taking on new patients, and I would have to be re-diagnosed again. Which I thought was completely mad, as I had only been diagnosed in 2022, and ADHD is a life-long condition. The staff at the surgery went back and checked and confirmed that I had to be retested but said because I had already been diagnosed, I could use the ‘Right to Choose’, which would allow me to be seen by a different ADHD unit, much sooner than Medway (before closing the waiting list, I believe the wait was around 7 years according to their website).

Appointment Expected waiting time*
ADHD assessments Up to seven years
Autism assessments Up to three years
Medication reviews Up to two and half years
Post-diagnostic support Up to two years
*Taken from the NHS Kent Community Health website

Whilst I have many criticisms of my GP surgery, I was very happy that they recommended the right to choose and were able to get me an appointment as soon as they could. It is important to say that I am a great believer in the NHS, but for a variety of reasons, the NHS does not function close to how it should and, in many ways, is a complete mess. It is also important to point out that whilst mistakes were made, all the staff I interacted with were very polite and friendly, but there are fundamental issues with the system that they use.

According to the staff at my GP surgery, the reason I had to be diagnosed was due to the way the NHS pays for people to be seen, so if I got diagnosed again, the ADHD unit would get paid. Whether this is true or not, I cannot say, but when I had my meeting, it became obvious that the information was incorrect.

With my 23 month wait last time, I was very happy to find out that I wouldn’t have to wait nearly as long. With an appointment being booked for the 12th July 2024, so around 2 months after I enquired.

The appointment would take place online, and I was very honest with the doctor when asked about how I was. I said, that the appointment was a bit of a waste of time, as I had already been diagnosed, which came as a bit of a shock to the doctor. After that, he told me I didn’t need to be retested and that all I had to do was send a copy of my NHS diagnosis to him, as well as confirmation from my cardiologist that I hadn’t had a heart attack. Also, to contact my GP surgery about getting an ECG. All of which I did the same day.

Unfortunately, this is where everything slowed down to a crawl. My GP surgery said that I couldn’t book an appointment until the ADHD unit wrote to them, asking for them to book an ECG. August passed and I heard nothing. I wrote to the ADHD unit and asked what was happening, and the doctor replied that he would get onto it. In September, I got a phone call from my GP surgery asking if they could send my cardiology letter to the ADHD unit (which I had already sent), but for the rest of September, I didn’t hear anything more.

In the end, I waited until October. I first wrote to them on the 2nd but did not hear anything, so I wrote again on the 23rd of October and received a reply the next day, telling me that they had sent the letter asking for an appointment on the 2nd of September.

Up until this point, I had been very patient with the GP surgery, but this really got me rather angry, so the next day, I went up to the surgery saying that I would like to put in a complaint because the entire situation had turned into a bit of a farce. Now, whilst I was angry, I tried to remain as polite as possible with the member of staff I was dealing with, and to the receptionist’s credit, after going through the details, she asked me to sit down, and she would get me an appointment with the doctor straight away.

So, within an hour of seeing the doctor, I was able to ring up the cardiology department and book an ECG on the 15th of November. This entire episode had started two years before, due to an ECG, and I was extremely worked up and nervous about the appointment. So, on that day, my heart was pumping like a school dinner bell, which made me even more worried, because I hoped that would affect the results. Whilst with the nurse, I was told that my results would be sent to my surgery by the Wednesday of the next week (5 days).

Sadly, there was a bit of an issue. During November, my doctor’s surgery was merged with another surgery and all the computer systems were down and would not be up until the week after. By this point, I had decided to be much more hands-on with the surgery. Contacting them to check to see when their computers would be working again. I was told by the receptionist that it could take a while as there were over 500 emails that needed to be gone through, but she would keep an eye out for the letter and would contact me.

The GP surgery actually texted me the next day, but I missed the text until the day after. I called the GP surgery and spoke to the receptionist, asking if she could send me the results to forward to the ADHD unit. Sadly, she couldn’t, but she was very helpful and was able to send the results directly to the ADHD unit.

So, an appointment was eventually booked for me to be seen on the 10th of December. But I soon received a strange text asking me to contact my GP surgery about where the ECG report should be sent. Now, this worried me a little because I was sure that the receptionist had already sent the report, and I contacted the ADHD unit to confirm this, and the reply suggested that they had. So I rang the GP surgery to tell them that I thought the letter had been sent. The next 20 or so minutes, were quite eye-opening and may go a long way to explaining the complete mess.

The receptionist (a different receptionist), told me that she had no idea who the letter had to be sent to. I explained that the letter had been sent on the 2nd of September and received by the GP surgery on the 4th of September, but I was told that the GP surgery hadn’t received anything on those dates, and I had to point out that I had confirmation that it had been sent out on the 2nd, and had spoken to the receptionist that it had arrived on the 4th. Also, if the letter had not been sent, I wouldn’t have been able to get an ECG. So the receptionist I was speaking to checked back to July, and according to the computer system the letter had been sent in July on the day of my ADHD diagnosis (which it wasn’t).

It seems pretty obvious that the computer system at the surgery is a complete mess. With information being recorded incorrectly, for some reason, this is incredibly worrying and could be life-threatening. Fortunately, in my case, it isn’t.

A few days later, I was asked to book an appointment with my GP to confirm my ECG results, and a few days after that, the ADHD asked the GP surgery to book a doctor appointment for me. When I spoke to the GP surgery, I told them I already had an appointment, and it probably wouldn’t be worth booking a second appointment.

To sum up that appointment, the doctor thought that she was speaking to me about my ECG results, as they had shown that I had an irregular heartbeat, and I said that the appointment was about my ADHD medication. In the end, we compromised and spoke about both. I said that I was very nervous, that may have been an issue, and that my previous appointment in January did not show the issue. I also asked about a few other things, and I am now going to be having some more tests, just to check.

As for my appointment with the ADHD unit, I will talk more about that in the 3rd part, where I talk about going onto new medication.