Getting diagnosis (adult) - yes or no

GPs are very fond of high-handed dismissal of patient concerns and can be extremely arrogant. I've had my life saved three times by (in order) my mother and my wife, because they ignored two GPs, and then a doctor in A&E.

So our family's direct, personal experience is that parts of the NHS are very good, but if you have a real problem, you're on your own.

If you can't fight for yourself (which the most vulnerable people can't) may your God help you.  Here's what happened, briefly:

1.  In the 1970s, my mother ignored a GP, who was also a family friend, when I developed a lump on my neck and he dismissed it.  He said it was 'strain due to revising for my A Levels and leaning on a hand'; he said that for weeks, and became cross, frustrated, and in the end, patronising, with my mother, who thought it was more serious. She got equally strident back (she's not to be trifled with) and in the end, to shut her up, I was admitted to hospital for tests.

It turned out to be cancer, requiring urgent treatment, and although I'd only gone for a few hours of tests, I was admitted straight away and didn't go home for months; but that treatment was delayed by weeks because of the arrogant intransigence of our 'family friend' GP.  .   

2.  Some years later, in the mid 1980s, a GP in a different region of the UK, who (again) I knew socially through his daughter, told me to go home and rest because "you just have chicken pox" ... but if you've had your spleen removed and have a damaged immune system due to cancer treatment, chicken pox can kill you.  I was 999-d into ITU because my mother, 150 miles away, could tell over the phone that this was more serious than just 'chicken pox'. She drove up through the night and an ambulance was at the door within 30 minutes, the crew wearing hazmat suits because of my physical appearance.  I was in ITU for 10 days with severe Sepsis as a secondary infection and for the second time, my family was advised to prepare for the worst. 

(Both GPs at least had the common decency to offer extensive and humble apologies, though in the second case, it was fairly transparent that he was mainly trying to stop me pursuing it on a formal basis.  My parents' friendship with the first one never recovered; my mother said she could forgive his misdiagnosis, but not his offensive, patronising attitude and show of petulance and annoyance at the alleged waste of his precious time when she insisted something more serious was wrong.  I have to say his apologies were fullsome, and actually a bit teary, and he did a lot to try to make amends; my mother always said afterwards that she was on speaking terms with him, but that didn't mean she wanted him to come for dinner again).   

3.  A decade ago I was admitted as an emergency to hospital and after a few hours the A&E doctor told my wife to take me home, there was nothing wrong with me. My wife, and (fortunately) a senior nurse, disagreed; the nurse quietly moved me to a more discrete area, did a load of tests, and by some means had me admitted to a ward, behind the doctor's back.  The following morning I experienced sudden and dramatic blood loss in the ward (haemoglobin fell from normal to about 5.5 in minutes, which means your veins are collapsing and a heart attack is imminent, blood all over the floor, crash cart, emergency transfusions etc).  If this had not actually happened in a hospital, it would not have been survivable; no ambulance could have got there in time.  That particular doctor presumably never knew that his daft, patronising comments to my wife had been ignored and that I was admitted without his knowledge, so he'll have learned nothing from his mistake.  

Some of them think they are the only people who are busy, that they are more important than the rest of the population, and that no one else has the academic rigour required to read and comprehend peer-refereed scentiific papers. 

NAS77223 said:

I feel getting a diagnosis will help me understand myself and accept myself more.

Indeed it will.  I had a diagnosis at 64 and it has fundamentally improved my life, because I've been able to study autism, approach it from an informed base, and re-engineer aspects of my interaction with other people.

NAS77223 said:

It may also help my son which is the most important thing to me.

Absolutely.  All self-knowledge contributes to your parenting skills, and since there is almost certainly a heavy inherited element in autism, it may help you to identify it in your offspring - and early diagnosis for them is important on multiple levels.

Your GP's comment was annoying and ill-informed.   There's no "cure" for autism (as pretty much everyone knows) but that's hardly a reason for not having a diagnosis.   

What they meant was "we're very busy dealing with priorities because of Covid - if you don't have a condition that will kill you, in the next few months, if untreated, we haven't time for it". 

But they should have the decency to say that (many people would understand, given current circumstances) and not fob you off with an immature, factually incorrect comment.   

Good luck with everything.  

GPs are very fond of high-handed dismissal of patient concerns and can be extremely arrogant. I've had my life saved three times by (in order) my mother and my wife, because they ignored two GPs, and then a doctor in A&E.

So our family's direct, personal experience is that parts of the NHS are very good, but if you have a real problem, you're on your own.

If you can't fight for yourself (which the most vulnerable people can't) may your God help you.  Here's what happened, briefly:

1.  In the 1970s, my mother ignored a GP, who was also a family friend, when I developed a lump on my neck and he dismissed it.  He said it was 'strain due to revising for my A Levels and leaning on a hand'; he said that for weeks, and became cross, frustrated, and in the end, patronising, with my mother, who thought it was more serious. She got equally strident back (she's not to be trifled with) and in the end, to shut her up, I was admitted to hospital for tests.

It turned out to be cancer, requiring urgent treatment, and although I'd only gone for a few hours of tests, I was admitted straight away and didn't go home for months; but that treatment was delayed by weeks because of the arrogant intransigence of our 'family friend' GP.  .   

2.  Some years later, in the mid 1980s, a GP in a different region of the UK, who (again) I knew socially through his daughter, told me to go home and rest because "you just have chicken pox" ... but if you've had your spleen removed and have a damaged immune system due to cancer treatment, chicken pox can kill you.  I was 999-d into ITU because my mother, 150 miles away, could tell over the phone that this was more serious than just 'chicken pox'. She drove up through the night and an ambulance was at the door within 30 minutes, the crew wearing hazmat suits because of my physical appearance.  I was in ITU for 10 days with severe Sepsis as a secondary infection and for the second time, my family was advised to prepare for the worst. 

(Both GPs at least had the common decency to offer extensive and humble apologies, though in the second case, it was fairly transparent that he was mainly trying to stop me pursuing it on a formal basis.  My parents' friendship with the first one never recovered; my mother said she could forgive his misdiagnosis, but not his offensive, patronising attitude and show of petulance and annoyance at the alleged waste of his precious time when she insisted something more serious was wrong.  I have to say his apologies were fullsome, and actually a bit teary, and he did a lot to try to make amends; my mother always said afterwards that she was on speaking terms with him, but that didn't mean she wanted him to come for dinner again).   

3.  A decade ago I was admitted as an emergency to hospital and after a few hours the A&E doctor told my wife to take me home, there was nothing wrong with me. My wife, and (fortunately) a senior nurse, disagreed; the nurse quietly moved me to a more discrete area, did a load of tests, and by some means had me admitted to a ward, behind the doctor's back.  The following morning I experienced sudden and dramatic blood loss in the ward (haemoglobin fell from normal to about 5.5 in minutes, which means your veins are collapsing and a heart attack is imminent, blood all over the floor, crash cart, emergency transfusions etc).  If this had not actually happened in a hospital, it would not have been survivable; no ambulance could have got there in time.  That particular doctor presumably never knew that his daft, patronising comments to my wife had been ignored and that I was admitted without his knowledge, so he'll have learned nothing from his mistake.  

Some of them think they are the only people who are busy, that they are more important than the rest of the population, and that no one else has the academic rigour required to read and comprehend peer-refereed scentiific papers. 

NAS77223 said:

I feel getting a diagnosis will help me understand myself and accept myself more.

Indeed it will.  I had a diagnosis at 64 and it has fundamentally improved my life, because I've been able to study autism, approach it from an informed base, and re-engineer aspects of my interaction with other people.

NAS77223 said:

It may also help my son which is the most important thing to me.

Absolutely.  All self-knowledge contributes to your parenting skills, and since there is almost certainly a heavy inherited element in autism, it may help you to identify it in your offspring - and early diagnosis for them is important on multiple levels.

Your GP's comment was annoying and ill-informed.   There's no "cure" for autism (as pretty much everyone knows) but that's hardly a reason for not having a diagnosis.   

What they meant was "we're very busy dealing with priorities because of Covid - if you don't have a condition that will kill you, in the next few months, if untreated, we haven't time for it". 

But they should have the decency to say that (many people would understand, given current circumstances) and not fob you off with an immature, factually incorrect comment.   

Good luck with everything.  

Gosh, I'm sorry to hear this, what an horrendous experience thankfully you have a supportive family. Yes I even said to them I'm happy to go private as I don't want to take the time up of an already overstretched NHS or that I was happy to wait until this 'calmed down'. Luckily my work provide private medical benefit so I've just been on the phone to Bupa who have forwarded my the details to get the ball rolling. I feel very fortunate to have this and feel for those who don't have this option in place. I'm certainly not here to bash the doctors I think the vast majority do an amazing job in a Very under resourced and challenging time and I'm very grateful to them and support our NHS. However more needs to be done for the Autistic community regarding diagnosis without a shadow of doubt. I'm a big believer in helping yourself and doing what you can for your own situation but sometimes intervention and support is needed and in this example I can't diagnose myself! Hopefully the government will give this problem more attention, maybe Boris can discuss this at his next garden party