Bewilderment!

After a two year assessment period, my 10yo son was last week diagnosed with ASD. I was given a phone number to get booked into a ‘Post Diagnosis session’. Designed to help understand the diagnosis and find support etc in dealing with it. Wonderful. Except there are no sessions available until next year 

NEXT

YEAR

!!

is this a usual occurrence? We are in Kings Lynn, Norfolk. 

Exasperated is an understatement 

  • I take your point.  Money should always be spent wisely.  

  • Crystal12, Sorry but I have to take issue with that. Yes, many NHS staff are amazing, and yes, with an every increasing demand they struggle to deliver everything to everyone, and yes over the years the government may have not kept funding up with demand, but apparently they are throwing money at them now, but consider this:

    I have always had issues. over the past 25 years I have had counselling, have been put on various medications, from many GP appointments, I have not been good with my health due to my anxiety, which has probably contributed to some other demands and costs to the NHS. I have spent the past two and a half years battling with the NHS which I reckon has taken around 15 GP appointments, a course in anxiety, booked on CBT course, multiple reviews for funding and teams reviewing the possibility of assessment, running through an NHS complaint with lots of back and forth to get to the point where they would re-refer me with the information that should have been provided in the first place. My GP didn't fill in the funding paperwork correctly the first time, and then didn't pick up the reply. They didn't submit the required information for an assessment and again missed the reply explaining why it was dismissed.

    If you add up all the NHS costs I reckon it would be around 100 times that necessary had they correctly identified, accepted and diagnosed my issues from day one. And after all that they gave me a response that I did not tick all the boxes so would not even give me an assessment. Went private, got an answer in two weeks. Job done.

    To be honest I don't blame my GP, no matter how arrogant and dismissive he was with me (maybe I do really). I think he simply did not understand the condition or me. However, I do blame the NHS as an organisation for not being educated and equipped to deal with it efficiently. This is the problem with them. Yes, they need more money. They always will, but they need to spend that money wisely, which they certainly have not in my case.

    Sorry for the rant, but they have really disappointed me with sheer incompetence and a lack of expertise, which I hoped of all organisations, I would have received from them.

  • To those blaming the NHS:  Don't blame the NHS for the ridiculous waiting time - put the blame where it lies, with the government

  • From what I have seen of the NHS's knowledge in this area, you are probably better off researching yourself and seeking advice from others with direct experience. Good luck. Stay positive.

  • thank you so much for the links!  I’ve visited the local library and come home laden with books. I’ve joined the local NAS and intend to frequent their coffee mornings! I think it’s a case of research, lists and unpicking of information.

    i think I naively thought that when I got his diagnosis there would be someone saying, right here’s what you need to do...here’s what’s available...etc haha!

    this feels like a great community here on the forum so I imagine I’ll find lots of support online Slight smile

  • Yeah NHS! Thank goodness for things like NAS and other groups and organisations!  I have a list to work through for local groups etc, and of course all you lovely people here on the forums. 

    I’m going to go t9 the first local NAS coffee morning that I can make it to, get as much tips, advice e5c as I can. 

    Thanks for the response Slight smile



  • After a two year assessment period, my 10yo son was last week diagnosed with ASD. I was given a phone number to get booked into a ‘Post Diagnosis session’. Designed to help understand the diagnosis and find support etc in dealing with it. Wonderful. Except there are no sessions available until next year 

    NEXT

    YEAR

    !!

    is this a usual occurrence? We are in Kings Lynn, Norfolk. 

    Exasperated is an understatement 



    And as feels and so many other parents know ~ not really that unusual at all.

    Some find getting hold of books on the matter more amenable than waiting all big and disorientated for months on end, such as THE COMPLETE GUIDE TO ASPERGER'S SYNDROME by Tony Attwood, which is freely available as a PDF if you click or tap here.

    You could also peruse on this website forum involving the article After your child's diagnosis ~ if you tap or click here, or else communicate with the community members here who either autistic themselves and or as have autistic children and are or have been through much the same circumstances themselves. 

    Perhaps try this link also:



    https://www.autismlinks.co.uk/support-groups/group-support-east-of-england/nas-west-norfolk?region=East%20of%20England



  • Wow that really is a shocker. Presume this is NHS? Appaling situation, but not unusual I feel. 

    I think NAS can help you find a local support group and they have pages on the website as to what to do after diagnosis. There is a telephone helpline to get you started as well.

    Best x