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Difficult to be taken seriously by the NHS (wall)
victorn
Posts: 5 Confirmed not a robot
My GP has recently referred me to a service for adults on the autism spectrum (National Adult ASD/ADHD psychology service). I recently found out after calling them that even if the special funding request was approved, their waiting list is 36 months!
It's just another limbo I've been put in. I told them that I had already been stuck in this situation for over 5 years, but she said 'sorry, but the waiting time starts from when we get the referral'
My main issue is the severe insomnia that I have that is the major cause of a constant headache. It's the reason I had to drop out from my uni course. For a long time I couldn't find a job or study because the pain made it difficult to concentrate on anything. This May however, I was injected with Botox and that reduced the pain considerably, so I started volunteering at a pre-school. Unfortunately the pain has been increasing again, and I called the hospital to find out that my second set of injections was delayed (!!!). I was meant to have them 10 weeks after the 1st set, but they say that it is not possible, and that I have to wait until August at least.
The local talking therapies service felt it was not in my best interest to see me, since I had already done CBT with them twice. They referred me to a sleep clinic, which did not accept my referral because I had been previously discharged there. The psychiatrist in charge said that in his opinion my issues 'are not entirely sleep related' and that I needed to see someone specialised in ASD.
The local community mental health team has also rejected my referral. I tried pressing the GP for understanding what referrals are accepted, she couldn't give a straight answer but the idea I got is that they only see people who are psychotic, bipolar or suicidal, and another doctor said they're 'not commissioned to treat insomnia'
I just completed Sleepstation, which is an online service paid for by the NHS to help people sleep better. I have also done 8 sessions with a private psychologist specialised in sleep, so on top of the 2 CBT courses done through IAPT that's at least 4 times I have tried those psychological interventions to help me sleep better
(regular bedtime, exercise during day, sleep restriction etc). It's just not enough.
It is well known that insomnia is common in ASD. It's not fully understood why.
All I need is a psychiatrist who's willing to prescribe medication to help me sleep. I wouldn't probably even need Botox treatment anymore for the headache.
I just called the local crisis line and was recommended to go to A&E. I will go tomorrow morning when the doctors are starting the day. I am not sure of what they can do. But I currently can't see much else
It's just another limbo I've been put in. I told them that I had already been stuck in this situation for over 5 years, but she said 'sorry, but the waiting time starts from when we get the referral'
My main issue is the severe insomnia that I have that is the major cause of a constant headache. It's the reason I had to drop out from my uni course. For a long time I couldn't find a job or study because the pain made it difficult to concentrate on anything. This May however, I was injected with Botox and that reduced the pain considerably, so I started volunteering at a pre-school. Unfortunately the pain has been increasing again, and I called the hospital to find out that my second set of injections was delayed (!!!). I was meant to have them 10 weeks after the 1st set, but they say that it is not possible, and that I have to wait until August at least.
The local talking therapies service felt it was not in my best interest to see me, since I had already done CBT with them twice. They referred me to a sleep clinic, which did not accept my referral because I had been previously discharged there. The psychiatrist in charge said that in his opinion my issues 'are not entirely sleep related' and that I needed to see someone specialised in ASD.
The local community mental health team has also rejected my referral. I tried pressing the GP for understanding what referrals are accepted, she couldn't give a straight answer but the idea I got is that they only see people who are psychotic, bipolar or suicidal, and another doctor said they're 'not commissioned to treat insomnia'
I just completed Sleepstation, which is an online service paid for by the NHS to help people sleep better. I have also done 8 sessions with a private psychologist specialised in sleep, so on top of the 2 CBT courses done through IAPT that's at least 4 times I have tried those psychological interventions to help me sleep better
(regular bedtime, exercise during day, sleep restriction etc). It's just not enough.
It is well known that insomnia is common in ASD. It's not fully understood why.
All I need is a psychiatrist who's willing to prescribe medication to help me sleep. I wouldn't probably even need Botox treatment anymore for the headache.
I just called the local crisis line and was recommended to go to A&E. I will go tomorrow morning when the doctors are starting the day. I am not sure of what they can do. But I currently can't see much else
1
Comments
I'm so sorry the struggles you've been through just to try to sort out your sleep. It seems very draining and completely understandable you're probably fed up.
I am surprised your doctor will not prescribe you any sleeping medication since you have tried all of the therapeutic ways to improve your sleep.
I'm sorry I don't have an answer for you, but I am here to listen if you just wanted to let all your frustration out. I hope A&E will do something for you. It may also be worth calling 111 and see if they can suggest anything?
Unfortunately, there seems to be a gap in the NHS for adult ASD Mental Health services.
Please keep us updated with how you get on
I had the Botox injections yesterday but unlike the 1st time it didn't provide any pain relief.
I have sent a form to healthwatch to help me complain to the local clinical commissioning group about the special funding request. My GP said they meet once a month to look form a panel to look at these referrals. They informed him in june they couldn't meet due to 'unforeseen circumstances', but said nothing in July. My GP sent them an email inquiring about my referral on the 2nd this month, and they have still not replied.
Even when after I told A&E that I was suicidal these people didn't take me seriously. I'm starting to get really worried I might give it all up one day. 5 years is enough
Firstly welcome to the community and well done for reaching out. I'm hearing that you are on a 36 month waiting list for special funding. That sounds really frustrating. I'm also hearing that you are experiencing insomnia which is causing headaches and that the 2nd botox injections haven't helped. I'm sorry to hear that A&E and the botox injections weren't much help, that sounds really tough. Have you spoken to anyone since about how you can manage you pain? Echoing what @daisyella12 has mentioned, 111 may be able to refer you to a service that can help.
Please remember we're all here for you, if you need to talk to anyone please reach out. You can call the samaritans on 116123 https://samaritans.org, to speak to someone or email jo@samaritans.org you can also text shout to 85258 to message chat with someone https://giveusashout.org.
Please keep us updated with how your are feeling, we're all here for you and I hope you get some answers soon.
He made me wear a watch to measure my activity over two weeks (it's called actigraphy). Then on my appointment he insisted that I did not have insomnia, because according to the watch I sleep on average 6hrs47mins. I tried talking to him that according to the neurologist and my own intuition, my constant headache is mainly brought on by insomnia (and the specialist sleep psychologist I saw said that people my age need 7-8 hours, but it varies from person to person) but he said that was not the problem and I needed to see a psychologist to reduce certain behaviours (like lying on the floor in the morning due to the intense morning headache).
I cannot believe I wasted 250 pounds to be dismissed like that. Even if I were to argue with him further, it would've been pointless, since I need a doctor that meets me eye to eye.
I am now looking for another private sleep specialis (the NHS would rather I died of old age before helping me).