"Discharged with no forward plan"

My son, in his early teens at the time, fell ill in March 2020 with a Covid-like infection that appeared to clear after a week but then came back with a vengeance and settled on his chest.

I couldn't get through to the GP or 111 at the time and A&E sounded terrifying so we stayed at home. A retired nurse friend guided me through how to massage fluid out of my son's lungs and proning (by phone)

My son was actively ill for about 6 weeks, then weak for another 4. By early summer he was experiencing neurological symptoms, couldn't balance properly or walk and was in constant pain. He frequently passed out, even when lying down and had long periods where he glazed over and was non-responsive.

Of course we were in lockdown, so GP contact was limited. I spoke to a post-viral paediatric expert who recommended blood tests, but our GP just fobbed us off via email. 

I then contacted our paediatrician who was soon to retire. They were concerned that my son was developing Fibromyalgia and tried to get him referred to a rheumatologist. That was refused and instead we were referred to the children's CFS clinic in Dorchester. 

At the appt in December 2020, the consultant talked a lot, but very little actually about my son. The examination was cursory and there seemed to be no interest in his dysautonomia symptoms, his pain, fainting, absences or lack of mobility. Also refused to do blood tests, and referred us back to the GP. 

The letter we received bore no relation to what we had said at the appointment and offered no help. Just encouragement to my son, who could by then stand for less than 2 minutes, that he was fine and not to worry.

Around this time my son also had a healthcare medication check at the GPs. The poor HCA was so worried because his heart rate was resting at 85 and jumping to 180 while his BP dropped. This was our first indication that he probably had Dysautonomia.

Concerned by this, we asked the GP, who still hadn't seen my son in person, to refer us to the Long Covid clinic. We had a telephone appointment about 6 weeks later, February 2021 I think. The Long Covid clinic decided that they couldn't diagnose my son in case it was an underlying condition instead. This seemed crazy as Covid, like other viruses, can trigger underlying conditions and co-morbidities. Nevertheless, we were discharged back to the GP with advice to rule out HEDS. 

The GP, who still hadn't seen or spoken to my son was confused that I had asked for a referral to Rheumatology, but agreed that they were the HEDS people.

Apparently this had to be done via Paeds, so we were placed under a general paediatrician. 

Other than my son remaining ill and us consulting a private paediatrician about MCAS, nothing happened until June, when we saw the NHS paediatrician. They seemed very concerned that we were working with a nutritionist and a private paediatrician and said that someone needed to have overview. This seemed judgemental and unjustified, especially given the complete lack of GP and hospital support.

However they did say that they had researched and there were no Tilt Tables in Dorset to test my son's Dysautonomia. That was apparently meant to be an end to that, but I had checked the POTs website and asked for a 24 hr ECG as an alternative diagnostic route. The doctor agreed. 

We were also referred to the rheumatologist, who I found to be dismissive, even mocking and minimised my son's symptoms. 

This was incredibly upsetting for my son, who by now had been ill for over a year. Too ill to see his friends in real life, too ill to go out. He was exhausted from trying to compensate for his dizziness and pain and so tired from trying to talk and participate in online school when his memory and cognitive processing were so poor. 

In the following months my son was called into the local surgery for a number of blood tests. No one explained what these tests were for, or discussed the results with us. It was made very difficult for us to get copies of the results. We did manage to share some of them with the private paediatrician. 

The private paediatrician continued to prescribe medications for my son, but the GPs were incredibly slow to act on them. Each letter took, on average, 3 E-consults, two visits, hand-delivered letters and about 5 weeks of waiting before any prescriptions were issued. 

Our follow-up with was in September 2021. We got helpful advice about my son's gastric symptoms and then told that the ECG had not shown any issues. When I questioned this it was revealed that the activity diary that we had submitted had been lost and, rather than contacting us immediately, they just left it. The doctor seemed to think this wasn't a problem and didn't offer to repeat the ECG. We were so stunned that I didn't ask. I intend to write to them about this.

I asked for my son to be referred to a specific paediatrician who has a good reputation for understanding and treating post Covid patients and dysautonomia. 

The doctor did not refuse, but said they would e-mail and see if this was possible... but then told us that we shouldn't be looking for a magic bullet as there wouldn't be one and advised my 15 yr old, who was fighting back tears of rage, to work on his positive mental attitude.

I don't think that this outdated theory of post-viral conditions being psychosomatic has any place in modern medicine. Disappointingly it was clearly also the bedrock of the CFS clinic.

My son was then discharged, with no forward plan. 

I strongly believe that the NHS, from the GPs at Ammonite Medical centre, Bridport, to the Paediatricians at DCH and the Cardiology dept, have comprehensively failed my son and made an already awful situation quite impossible.