I am so angry.

We talk a lot on here about how we are not listened to. For the most part I have defended health professionals unless they are truly incompetent, but this week I have been pretty distraught and not about my own condition.

My 28 year old son was until six months ago a relatively healthy young man. He had a history of migraine since 11, then vaso vagal attacks, then it became temporal lobe seizures that were absence seizures . He was put on Sodium Valporate and despite requests, once he became an adult there was no yearly follow up.

Two years ago he asked two come off the medication as a trial as he said he felt sluggish. The only side affect was more migraine. His GP was very slow to treat this. I suggested, with his history of seizure Topriamate as it is a cross over drug or a beta blockers. They had both worked for me. We had to practically beg for a neurology referral. Neither of these drugs were were given.

A year later he had started a new job. His migraines increased, he got pains in his feet legs and started getting palpitations and arthymia. Then fatigue. He returned to the GP. She put him on Atenalol. Which made him vomit. Then finally Propranalol. The migraines started to reduce once the dose was increased twice, but the other symptoms got worse. I told him to ask for a thyroid test. It came back as hyperthyroidism. He had lost 4 stone in a year. She referred him to the endocrine team.

Now this GP used to be my GP so knew my history. Three months later no appointment yet. When he went back with swelling in both legs to the knee, she said he had an infection! in both legs! He was breathless, shaking, and could hardly stand. This weekend I have seen him deteriorate. On Monday I asked for an emergency appointment with another GP. We said we wanted a referral that day to the hospital.

He was seen in the assessment unit, all done in two hours. Thyroid crisis.

He was put on medication, which the pharmacy didn't have! I called on the Wednesday to be told it had been ready the day before and he hadn't been called. That same day he is called with an appointment for the endocrine team. Amazing.

Sorry for the long story, but I am amazed that GPs are unable to put a picture together from a history. They have to be forced into action. I have gone through this with my own condition and now I have to prompt doctors with my sons.

[Matilda7]

How lucky your son is to have such a well informed and competent parent!

Shows why we all have to fight to save our NHS..it is so sad to see such a well loved organisation being systematically destroyed and privatised so that a profit can be made from our anguish.

[Hidden in reply to Matilda7]

Thankyou for your support. I am so frustrated that after working for the NHS for 30 years I still find myself defending poor practice. The service we received from the hospital was excellent. The GP, although I understand the stretched resources and heavy case load, still should put together a picture of disease. She is the same GP who said I could not have Lupus as it is too rare. I saw my son an hour ago and he now cannot stand. He is waiting for emergency doctor.

[Matilda7 in reply to Hidden]

Keep us informed of progress. Hope you have better news soon!

[FionaHerts]

I'm so sorry to read this. I hope your son recovers quickly now he is starting the correct medication.

It is frightening how the GP missed all the signs, all for the cost of a simple blood test! The same happened with my mother in law and she was repeatedly told she had anxiety and put on antidepressants which made her worse. She was phoning the GP almost daily with rapid heartbeat, palpitations, hyperventilating, tummy troubles, losing weight, but It took another 9 months for the gp to do a thyroid blood test. My mother in law's overactive thyroid quickly came into range on medication and she has now fully recovered.

[Hidden in reply to FionaHerts]

Thankyou I am glad that your mother in law recovered quickly. I am sure that the medication will do its job. It is difficult watching your otherwise healthy son deteriorate so quickly. Its just another example of how people with chronic conditions have to become their own advocates and experts.

[Nitrobunny]

Oh my goodness I am so sorry to hear about your son. Unfortunately this type of thing occurs all too often, all over the world. Thank heavens he has you to advocate and support him through this crisis. My thoughts and prayers are with you both, the only thing that matters now is he get the best care possible of course. Good luck and best wishes -

S

[Alison-Brown]

Oh Jo what a nightmare. He's lucky he has you by his side, but how is it affecting you? Are you ok?

A xx

[Hidden in reply to Alison-Brown]

Absolutely exhausted. Brain dead from agreeing mainly.

[Jacki08]

How awful for you to have to watch this happen to your son. I do hope that he is soon sorted and back to good health.

[Damaged]

Way to go Johare ! So great you persisted and so very sorry it took so long. I can imagine your anguish. I sincerely hope the doctors are able to determine diagnoses and an effective treatment. I have been openly discussing all the errors made in my case so that they appreciate the need to be informed. We all need to know what these tests are, what the results mean and especially the drugs we are taking.

She has recently had several UTI's. She went to campus clinic and was given an antibiotic. The clinic failed to run a culture. My Biochem major lol. From my own recent experienced, I learned that all bacteria respond only to specific drugs. General antibiotics are ineffective and cause secondary yeast infections. A simple culture will identify the bacteria and identify the correct drug to treat it.

I hope he finds relief quickly.

[Hidden in reply to Damaged]

Yep masters of our own destiny and question everything. I used to feel like I was being difficult but now I don't.

[Hidden]

I'm so sorry you & your son had to go through this. You are a wonderful advocate for your son who was sick and had no strengh to fight for himself. My heart goes out to you both.

I am sad to say that your complaints of your medical system in the UK is the same as my complaints of the Canadian medical system....If fact maybe it isn't the medical systems, just maybe it is some of the doctors? I've come across the best of the best doctors here and I'm upset to say I've come across the worse of the worst.

Maybe doctor's offices should have a yearly report card reviewing their pros & cons hanging on their walls next to their medical diploma's? Then we the public can decide if we should risk our health or time on them.

All the best to you

Sue

[Hidden in reply to Hidden]

I agree there is little feed back. I would never want to replace our NHS and we are lucky to have it, I was proud to be part of it. As always there are people in any establishment that let others down, the trouble is when it is health there are dyer consequences. When the good doctors at the hospital asked about the GP care they raised their eye brows but they would not do more as it is still a colleague. I was just angry that I put together the initial signs of thyroid crisis, his GP didn't and then when he presented with a swollen, red leg and groin pain she didn't consider a DVT. She didn't consider the history of autoimmune conditions or fight for her patient to be seen quicker. I will follow this now I know she missed not just one but two life threatening conditions.