jj11
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Posts: 25
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Post by jj11 on Nov 23, 2016 13:45:32 GMT
I hate phones. I was born with a phobia of phones. I can remember as a child running behind a curtain whenever the phone rang, while other kids would run towards it, begging to be allowed to pick it up. I overcame the phobia after 7 intensive years of manning the phones of a breakdown business but still struggle with the mechanics of it. If someone in the room talks while I am listening on the phone then the voice on the other end completely disappears and I have to ask them to repeat. I cannot hear properly if there is room noise like a kettle or TV on. I don't hear well what people are saying especially if there are important details to remember. My speaking voice gets tongue tied. I generally have to plan my calls and have a list of key words in front of me.
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jj11
Member's not posted much yet
Posts: 25
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Post by jj11 on Nov 23, 2016 13:45:53 GMT
I hate phones. I was born with a phobia of phones. I can remember as a child running behind a curtain whenever the phone rang, while other kids would run towards it, begging to be allowed to pick it up. I overcame the phobia after 7 intensive years of manning the phones of a breakdown business but still struggle with the mechanics of it. If someone in the room talks while I am listening on the phone then the voice on the other end completely disappears and I have to ask them to repeat. I cannot hear properly if there is room noise like a kettle or TV on. I don't hear well what people are saying especially if there are important details to remember. My speaking voice gets tongue tied. I generally have to plan my calls and have a list of key words in front of me.
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Post by vagueandrandom on Dec 5, 2016 19:49:43 GMT
Yes gc7 . . .and atomoxotine can increase BP too! I finally wrote to the private specialist to tell him I won't be coming back. . . Still waiting to hear from the CCG after getting my GP to submit more 'evidence' (re-writing a letter that I drafted) . . The thing is that the CCG have a locum general psych (the one I saw who dx me with emotional instability and personality disorder) who 'can' dx and prescribe meds for ADHD. .apparently . .so that's their (ahem) 'specialist' provision sorted! It's amazing what you can find out when you start a local group and get active on Twitter! . .he's not a specialist, doesn't understand titration and will only prescribe mph at often too low a dose to be effective. . .he also kept referring to my 'concentration problems' and never referred to ADHD or thought that my mood swings were related . .anyway . .rant over. . No meds for me. . I have my last counselling session next week and I'm really worried I might get depressed again . .currently hyperfocussing on decorating, so I'm OK.
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Post by vagueandrandom on Dec 5, 2016 21:06:27 GMT
Thanks gc7 I'll have a look. I'm not menopausal yet . .but have to be careful to avoid progesterone due to eds apparently. . I'm glad it's working for you though. Just to add to my previous post . . I was talking to someone locally today who's not getting much from 36mg concerta and is unlikely to be offered a higher dose. When they listed all the meds they'd tried they were all different brand names for IR and XL versions of mph! They've asked for elvanse, but aren't holding out much hope. I'm not giving up with the CCG and am working with MIND to raise awareness within it and with local GP groups. Even if I get funding for out of area, it will only put me on the waiting list. I have a client workbook for adapted CBT, which I'm not getting far with, but my group are keen to get together after Xmas and work through it together providing accountability and support.
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Post by vagueandrandom on Dec 13, 2016 16:47:10 GMT
Just got the letter from PIP with my appointment to see a 'health professional'. . . 23rd December 8.45am . . happy xmas to me! good job I hadn't made plans or anything. . .
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Post by vagueandrandom on Dec 16, 2016 9:39:12 GMT
Thanks gc7 The PIP people caught me by surprise this morning. . . I answered the phone because it was a local number and I'm due at the Dr and counselling today. . anyway. . .someone wants to have Xmas. .so they cancelled and wanted to reschedule. . I was a bit rude rude to her . .told her to stop talking until I found my diary and turned off the radio . . .it's what I normally do. . .and asked if they'd send me a letter. . answer: probably not as it's Xmas, but I might get one . . . at least I got a choice of time, so it's not so ridiculously early. . so that's that. .5th January. .
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Post by vagueandrandom on Dec 31, 2016 12:22:16 GMT
OOOOOoooohhhKAY!. . . . I've had a couple of rather frantic angry days. . .the CCG turned down my application for funding to see an ADHD specialist out of area for the THIRD TIME! this time I took advice and wrote the letter as if it came from my GP and gave it him to transcribe as the CCG don't read anything from patients, even if the GP sends it in as evidence. . . Through my local ADHD FB group, I have discovered that the non-specialist psych who 'can' treat ADHD has left the Trust, so they have absolutely NO argument that I can get adequate treatment within secondary MH services. . . They're still insisting that I need to be clinically exceptional ie. need it more than anyone else with the same condition AND would gain more benefit from treatment than anyone else with the same condition. . BUT THEY DON'T PROVIDE ANY ADHD SERVICES FOR ANYONE! WHY SHOULD I NEED TO BE A SPECIAL CASE? Stick with me. . .it's going to be long, but shows what you can do with anger and hyperfocus . . I took to FB and Twitter and contacted a few charities . . .Twitter is brilliant! I recommend it if you can target the right people. . I have support from 2 ADHD service clinical leads and other people from support and campaigning groups. I tagged the CCG in my tweets and the CEO of my local MIND, who I've already had a meeting with after a previous ADHD rant and who regularly meets with the CCG. . .well, he joined in and the CCG has tweeted me back suggesting I contact PALS. I've been talking to a MH advocate through PALS to make complaints for the last 6 months, so I've contacted him again to discuss how to proceed. I've also got a meeting on Monday with an advocate for neurodiversity to help me write a letter to my MP. Hopefully, I'll know what I'm going to do before my GP appointment a week on Monday. . I'll update as things develop. . . my Twitter is @hulladder . . .there's some good contacts and info . . Happy New Year
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jonbob
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Post by jonbob on Jan 1, 2017 14:01:42 GMT
OOOOOoooohhhKAY!. . . . I've had a couple of rather frantic angry days. . .the CCG turned down my application for funding to see an ADHD specialist out of area for the THIRD TIME! this time I took advice and wrote the letter as if it came from my GP and gave it him to transcribe as the CCG don't read anything from patients, even if the GP sends it in as evidence. . . Through my local ADHD FB group, I have discovered that the non-specialist psych who 'can' treat ADHD has left the Trust, so they have absolutely NO argument that I can get adequate treatment within secondary MH services. . . They're still insisting that I need to be clinically exceptional ie. need it more than anyone else with the same condition AND would gain more benefit from treatment than anyone else with the same condition. . BUT THEY DON'T PROVIDE ANY ADHD SERVICES FOR ANYONE! WHY SHOULD I NEED TO BE A SPECIAL CASE? Stick with me. . .it's going to be long, but shows what you can do with anger and hyperfocus . . I took to FB and Twitter and contacted a few charities . . .Twitter is brilliant! I recommend it if you can target the right people. . I have support from 2 ADHD service clinical leads and other people from support and campaigning groups. I tagged the CCG in my tweets and the CEO of my local MIND, who I've already had a meeting with after a previous ADHD rant and who regularly meets with the CCG. . .well, he joined in and the CCG has tweeted me back suggesting I contact PALS. I've been talking to a MH advocate through PALS to make complaints for the last 6 months, so I've contacted him again to discuss how to proceed. I've also got a meeting on Monday with an advocate for neurodiversity to help me write a letter to my MP. Hopefully, I'll know what I'm going to do before my GP appointment a week on Monday. . I'll update as things develop. . . my Twitter is @hulladder . . .there's some good contacts and info . . Happy New Year Happy new year pickle You may well have just picked yourself up a new follower
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Post by vagueandrandom on Jan 9, 2017 12:22:06 GMT
Update. . I'm just back from the GP who treated me to another of his rants about NHS cuts and the government . .he gave me a copy of the letter he sent (but I wrote) to the CCG which confirms that the CCG didn't actually read it . . .their refusal of funding was for assessment in S***** and I/my GP asked for continued treatment in W******!!!!! FFS!! So . . I spoke to my complaints advocate who said that we need to complain first to the CCG because the ombudsman is unlikely to take my case until all local avenues have been exhausted. . .so . .the plan is . . . 1. Ask why they didn't answer my question in their response to my previous complaint ie. Why do I need to prove clinical exceptionality when they don't provide a service for anyone with ADHD? I now have written confirmation in response to a PALS enquiry that the NHS Trust doesn't Commission an adult ADHD service (they suggest asking my GP for referral out of area ) 2. Repeat the question and ask them to explain why their letter refers to assessment in S***** when the GP requested continued treatment in W******* 3. Ask them why they are ignoring NICE Guidelines and Quality Standards. I'm also trying to write a letter to my MP, but the person who was going to help me with it has been ill and I really need to do the company accounts and I have a job application to do and my ADHD procrastination has been crippling me this last week combined with a cold and what I fear to be the return of my depression. .I've had the same to do list for nearly 2 weeks, quite a lot urgent and and nothing crossed off. .and the longer it goes uncompleted, the more the fear of it takes over and I'm paralysed. . .
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Post by vagueandrandom on Jan 23, 2017 18:25:00 GMT
I haven't updated in a while. . .
So . .complaint to CCG sent off . .no points for PIP . .didn't get an interview for
the job I applied for although I have everything and more they asked for. . .
My counselling finished before Xmas and was advised to get my GP to refer me back
so I could continue and I got a letter which only offered a phone number, so I got
the courage to phone and they wanted to give me a phone assessment. . .
I asked if there was any other way as I find the phone difficult, but they said not. .
so I had to talk to someone who confused me and said I couldn't have counselling
indefinately and suggested going private and charities and groups and what do I want? . .
and I don't know what I want. . .what I want is some treatment for my ADHD . . .
but that's not going to happen anytime soon. . .they said I might need longer term
help (of course I do) and I told them I've been on the waiting list for psychotherapy for
more than 6 months. . .so I don't know what's going to happen and I'm feeling rejected
and helpless stuck between MH services and unable to get any help for my ADHD. . .
this and the stress of the phone call has meant I've been crying all afternoon. .
So frustrated. . .just needed to get this out of my head.
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Post by vagueandrandom on Mar 10, 2017 18:04:41 GMT
Hi All! . . I haven't updated this for a while. . latest in the saga of trying to get an IFR to go out of area
to a specialist adult ADHD service an hour's drive away. . .
I've had the latest response to my complaint to Hull CCG. They're still insisting that ANYONE with ADHD and
wants treatment must prove that they need it more than anyone else with ADHD. . .who are likely not to be dx
because they don't routinely commission any adult ADHD services. . . round and round . . . broken record . .
and a recommendation from a specialist isn't grounds for exceptional clinical need.
They didn't answer my question as to why the NICE Quality Standard didn't seem to have been followed, only that the
IFR panel consider all available guidance when making decisions.
So this is war!! They're ignoring NICE and it seems they just don't think 'ordinary' adult ADHD needs any treatment at all!!
I'm going to take it to the Ombudsman and get round to writing that letter to the Hull MPs.
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Lucie
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Post by Lucie on Mar 11, 2017 16:42:00 GMT
Hi All! . . I haven't updated this for a while. . latest in the saga of trying to get an IFR to go out of area to a specialist adult ADHD service an hour's drive away. . . I've had the latest response to my complaint to Hull CCG. They're still insisting that ANYONE with ADHD and wants treatment must prove that they need it more than anyone else with ADHD. . .who are likely not to be dx because they don't routinely commission any adult ADHD services. . . round and round . . . broken record . . and a recommendation from a specialist isn't grounds for exceptional clinical need. They didn't answer my question as to why the NICE Quality Standard didn't seem to have been followed, only that the IFR panel consider all available guidance when making decisions. So this is war!! They're ignoring NICE and it seems they just don't think 'ordinary' adult ADHD needs any treatment at all!! I'm going to take it to the Ombudsman and get round to writing that letter to the Hull MPs. God this is outrageous and absurd!! Bureaucracy gone mad. I'm so sorry your going through such a long drawn out battle to get the support you need. I was just reading back over some of your diary and could highlight huge sections of things I totally relate to. Thank you for sharing. It's nice to not feel so alone x
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Post by vagueandrandom on Mar 11, 2017 20:37:09 GMT
Thanks Lucie I look forward to reading your diary So today. . well, I didn't sleep much last night and I was up. . actually up! at 7am starting to write the letter to my MP. . . I've just finished. . it's 8.30pm . . I found that one of my support group has recently written to the same MP about being unable to change their meds, so I want to get it in while it's still fresh. I took to Twitter last night and got a lot of support and ideas . . .I've sent copies of letters to the CEO of HEY Mind and got some help with the letter from some brilliant ADHD online friends with experience of making complaints/writing to MPs etc . . On a happier note, I've managed to get a paid job for 2 days a week in a gallery I love
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Post by vagueandrandom on Jun 1, 2017 14:59:35 GMT
UPDATE: The Parliamentary and Health Ombudsman has decided to take no action on my complaint about the CCG.
They claim they have treatment available within Secondary Mental Health Services . . they don't!
I made a request to the NHS MH Trust PALS asking where I might get help with my ADHD and they replied that they don't have an Adult ADHD service and to ask the CCG for funding to go out of area.
I'm so angry and upset right now.
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Post by easilydistracted on Jun 1, 2017 19:30:23 GMT
Can you ask the Ombudsman for the evidence on which this decision was made? "We've taken all your money cos the nice man with the ball under the cups says there's a ball there, no we haven't seen it either but he's a really nice man so he must be telling the truth"
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Post by vagueandrandom on Jun 2, 2017 10:47:01 GMT
There's 4 pages of explanation . . . easilydistracted . . I'll write more when I've got time. .busy few days ahead. .
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Post by vagueandrandom on Jun 4, 2017 17:37:31 GMT
OK . . .I'm not as tired and upset today . . This is what the ombudsman said (extreme edit and paraphrasing)
The ombudsman said the CCG was right to turn down my IFR for out of area treatment by an ADHD specialist as there are local Secondary Mental Health Services and there is no evidence that I have exhausted local therapy options (I've been waiting over a year for some kind of psychotherapy, had to change IAPT counsellors because the first one I saw blamed my lack of control on my parents and I'm just about to finish with the only sympathetic IAPT counsellor in the city, who has no training in treating ADHD but has a teenage son with ADHD.)
This is a direct quote:
" We can see that in response to the first funding request, the CCG said that there are local mental health services available for people with ADHD. We have therefore asked the CCG for more information about the local services it commissions. It told us that it commissions both medication and therapy based services. The CCG said there are currently a range of therapy based services that can be accessed within the community including "Let's Talk" which support individuals with a diagnosis of ADHD. It did say that at present it commissions a limited medication based treatment service which does not now meet the latest guidance. The CCG said it is therefore in the process of reviewing it's post diagnostic support pathway and assessment and diagnosis pathway."
Basically. . . my CCG lied to the ombudsman . .
This is despite the CCG telling me in my last complaint (a copy of which was submitted to the ombudsman) "The CCG does not routinely commission treatment for ADHD" Apart from saying local MH services were adequate, they didn't tell me who my GP should refer me to instead of me repeatedly asking for out of area treatment.
The language. . "which support individuals with a diagnosis of ADHD" . . yes. . BUT NOT FOR ADHD SPECIFIC HELP, JUST GENERAL MH ISSUES. . and when I went, I was told that it would not be beneficial to treat my ADHD as my emotional instability/depression/anxiety should be tackled first (the psych wouldn't listen to me when I said these were caused by my ADHD) and he also reported "possible personality disorder" . .
"It did say that at present it commissions a limited medication based treatment service which does not now meet the latest guidance." At least it's admitting that the psych 'who can' prescribe ADHD meds is not a specialist (I know 2 people being prescribed by him and he won't prescribe anything but IR mph and in no larger dose than 10mg 3 times daily, which he describes as 'a very large dose')
The ombudsman did say that I might raise a complaint with secondary MH if I wasn't happy with their treatment. . .I'm bloody sick of making complaints!
And my MP never acknowledged my letter . .let's see what happens after the election . . .
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Post by easilydistracted on Jun 4, 2017 21:34:42 GMT
Where do the CQC fit into this? Or rather, given that they appear to be running round your area with a hot poker and sticking it up peoples backsides atm... can they be made to fit?
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Post by vagueandrandom on Jun 19, 2017 12:41:29 GMT
OK. . I saw my GP today for the first time after getting the Ombudsman's response. .
He's as angry as me and even suggested I change GPs to one in a different CCG area!
He's really angry and frustrated how the NHS has been changed to local services who want to keep their hands on the money
which has been allocated FOR THE PATIENT'S CARE . . he also agreed with me that the CCG seems to have lied to the Ombudsman.
SO. . .he's happy to refer me back to secondary MH services to test their claim that they have adequate adult ADHD services. .
ie. just so I have proopf for another complaint . . but I really don't want to see the non-specialist psychaitrist who 'can' treat
and prescribe ADHD meds because I had such a bad time with him misdiagnosing me with what he saw as unrelated conditions
and refusing to countenance any meds beyond 10mg x 3 mph IR for any case of 'concentration problems' . .
so my first step has been to contact PALS again asking what ADHD Services are available as they replied in January to say there were none.
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Post by vagueandrandom on Jun 22, 2017 18:49:26 GMT
Oooh. . .just got the response from my PALS enquiry. .
"Further to your email below, I can confirm that the position has not changed. At present we are not commissioned to provide any diagnostic or treatment service for adults with ADHD. Our current service is for children diagnosed with ADHD who are prescribed medication; we continue prescribing when they become 18. We are currently working with Hull Clinical Commissioning Group (CCG) in putting forward a case to deliver an adult ADHD service but we have no current timescales or guarantees a service will be commissioned in the near future. We are sorry for the situation you find yourself in."
So . .Hull CCG lied to the ombudsman. . . .hmmmm. . .
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Post by computermandan on Jun 24, 2017 23:02:31 GMT
Oooh. . .just got the response from my PALS enquiry. . "Further to your email below, I can confirm that the position has not changed. At present we are not commissioned to provide any diagnostic or treatment service for adults with ADHD. Our current service is for children diagnosed with ADHD who are prescribed medication; we continue prescribing when they become 18. We are currently working with Hull Clinical Commissioning Group (CCG) in putting forward a case to deliver an adult ADHD service but we have no current timescales or guarantees a service will be commissioned in the near future. We are sorry for the situation you find yourself in." So . .Hull CCG lied to the ombudsman. . . .hmmmm. . . Jeez what a complete bunch of PITAs Hope you can get this sorted asap or they pull their fingers out and get services running properly
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Post by vagueandrandom on Jun 25, 2017 6:32:06 GMT
It's frustrating gc7 and computermandan I've already let my advocate know the latest and we're coming up with a plan . .
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Post by contrarymary on Aug 3, 2017 20:41:25 GMT
Wowzer. can't believe how long this has dragged on.... you have amazing tenacity howzit going vagueandrandom? xx
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Post by vagueandrandom on Aug 4, 2017 12:22:37 GMT
Hi contrarymary I've just come off the phone with my advocate . . SO . . .I'm going to inform the ombudsman that their decision was based on inaccurate information provided by the CCG, write to the CCG with the response from PALS that there are no adult ADHD services commissioned by the CCG, asking exactly what they believe their 'limited' services are and pointing out to them that general counselling/therapy that doesn't take into account a dx of ADHD can be ineffective if the practitioner delivering it doesn't have a good understanding of how ADHD affects thought processing/executive functioning and emotional regulation. I'm going to write another letter to my MP as I had no response to the last one and adapt it to send to the local Healthwatch. I'm not going to let it lie! Especially as I have people contacting me via my FB support group page who have been asked by secondary MH services if they really need a dx and told that it will take at least 2 years for an assessment! - UNTRUE! as they don't employ anyone qualified to assess for ADHD, so there's no waiting list! If they get referral out of area I know that the current waiting list is about 3 months! The fight continues . . not just for me, for everyone in Hull who can't get assesment OR treatment/support for ADHD!
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Post by vagueandrandom on Aug 4, 2017 12:27:39 GMT
Rant over. . this deserves a separate post . . I have just had my Access to Work grant accepted It was pretty quick and easy and they came to do a workplace assessment to assess my needs. They've recommended a noise-cancelling phone headset and dictaphone for notes and I'm getting 8 x 3hrs of ADHD/ASC coping strategies at home 100% funded
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Post by vagueandrandom on Dec 22, 2017 13:16:09 GMT
Wow! Forgot about this since it got moved down the forum running order . .
So? . .what's been going on? . .
I've asked the ombudsman to reconsider their decision as it was based on inaccurate information.
They have a massive backlog and won't be able to respond until the New Year. .
I've written to my MP, who's written to the CCG who have acknowledged their letter and
it'll take some time to respond. . .no surprise there . .
Better luck with the City Councillor who has raised ADHD provision with the Health Scrutiny Board . . .
even more interesting is that I met a woman who is going through ADHD assessment for her daughter
and the City Councillor is her mother! . .
I've started coaching and so far it's all been about self-care . .last session was taken up by sleep . .
My coach had suggested regular bedtimes, sleep hygiene type stuff and things to do to help
get to/get back to sleep. . .but it didn't work. . .
So we talked about why I worry about not getting enough sleep . .I drive an hour to and from work
and worry about not being safe driving home if too tired . . . I'm grumpy and emotional and find it
even harder to concentrate if I'm too tired . . .so I see going to bed as a chore and worry about
not getting enough sleep, which stops me from sleeping. . . .
So for the last couple of weeks, I've banned bedtime and bedtime routine. . . I sleep when I'm tired
and get up when I wake (even if it's with an alarm for work) . . I record lights out, waking time,
how tired I am during the day and whether I have a nap . .so far, it seems that my daytime tiredness
has very little correlation to length of sleep. I'm having better quality sleep and can be as alert on
3 or 4 hours as I am on 7 . . .who would've thought it?!!
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priya
Member's not posted much yet
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Post by priya on Dec 26, 2017 22:39:27 GMT
Hey Vague and Random!
Give me an upstate! Would be interesting to hear how you are a few years on and what mess you're on and wether it's made a difference to your life in general?! X
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Post by vagueandrandom on Dec 27, 2017 1:05:44 GMT
Hi priya My last update was only a few days ago . . I can understand why you wouldn't want to wade through 2.5 years and 13 pages . . . To recap . . I'm not on meds and haven't seen an ADHD specialist private or NHS in more than a year because I moved to a city without any adult ADHD provision a few months after diagnosis . . I'm still trying to get out of area referral for treatment on NHS. I've tried concerta - no great improvement in focus and bad crashes and tiredness, IR methylphenidate which increased my already overactive sensory perception, making my concentration worse (and I kept forgetting to take them) I went private to try Elvanse, which I liked because it made me feel more awake, although not much improvement in focus and motivation, but my BP went dangerously high and the Dr didn't think I wasn't getting as much benefit as would be expected to warrant treating the high BP (my BP is usually normal to low) I'm absolutely NOT against meds . . I know loads of people who experience really good benefits . . you're dealing with the brain and everyone responds in their own way. So that's me . . I started a Support group and have been campaigning for better access to diagnosis and treatment . . . I regularly go to 3 other support groups in other cities. Since my initial diagnosis in July 2015 I have never had a medical professional talk to me about how ADHD might affect me and what I could do to help myself. . . I've made it my mission to do it for myself and talk to and help other people with ADHD. I've just started coaching paid for by Access to Work and I try to be kinder to myself. Getting a diagnosis has made an enormous difference to my life . . . now I know WHY I am how I am, I can try to make changes and ask for help. My mental health has really improved since dx too.
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Post by vagueandrandom on Jan 11, 2018 10:09:14 GMT
I've been meaning to write about my coaching experience . . I've only had 3 x 2 hour sessions so far . . The first was getting to know each other and deciding what I want from coaching. . Second was about self-care and how it can help the brain to work as well as it's able to . . this led on to my appalling sleep and resulting daytime tiredness, so I tried sleep hygiene. . . having a set bedtime and bedtime routine and using mindfulness techniques to help get to sleep and get back to sleep when I wake in the night. . . THIS DID NOT WORK! The mindfulness resulted in my brain waking up and me getting anxious about it not working! So, the next session was a full 2 hours talking about sleep and why I worry so much about not getting enough . . a big worry is being tired at work and being too tired to drive back safely (I work an hour's drive each way and it would take twice as long by public transport) My job is undemanding, enjoyable and there's very little pressure, so it doesn't make me tired . . .so my coach concluded, correctly, that I see going to bed as a chore. . . and asked me if I had any proof that my daytime tiredness was directly related to the amount of sleep I was getting . . .Sooooo . .for the last month I've done away with bedtime! I go to bed when tired and get up when I wake . .regardless of whether I have to get up early for work (I still have alarms to wake me up on work days) I record the times: lights out, waking during the night and getting up, and also record daytime tiredness . . .taking a nap if I'm able to and recording the times if I'm not able to nap . . .and it turns out that daytime tiredness has very little to do with the amount of sleep I've had the night before! Some nights I have little sleep and am not tired at all during the day and other times I get a lot of sleep and am really tired . . . CONCLUSION: I'm now not anxious about getting enough sleep, or getting to bed at a 'normal' time. . I don't get any more sleep, but I think the quality of sleep is better. . .some days I'm still really tired, but I now know it's not always related to the amount of sleep I'm having. . . If I'm not ready to go to bed until 3am, I don't worry about it. . .I'll probably get to sleep more quickly and not toss and turn and worry about not getting to sleep. . . . if I wake an hour or less before my alarm goes off, I get up, rather than try to get a bit more sleep and end up dozing off just before the alarm, which wakes me in the middle of a dream, resulting in disorientation and grogginess . . . I know this goes against all sleep advice and it won't work for everyone, but it seems to be working for me
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Post by vagueandrandom on Jul 9, 2018 11:12:54 GMT
Today is my 3 year ADHD diagnosis anniversary, which also makes this diary 3 years old tomorrow So what’s happened? I moved house to somewhere without an ADHD service, went Private to try Elvanse, stopped taking meds, tried and failed to get funded to see a specialist out of area and complained as far as the ombudsman. I’m now a bit of an expert in ADHD and the NHS, I’ve started a support group and continue to put the pressure on for everyone who needs ADHD assessment and treatment wherever they live. Got a job, lost a few more friends, made some more acquaintances. . . had Coaching. . .and I’m still trying to get some help for my ADHD. . . I’m currently drafting letters to my MP, the MH commissioner for the CCG and possibly to start a new round of complaints. . . The CCG, under pressure to provide a service for adults with ADHD, now provides ’ADHD diagnostic assessment on a case by case basis, but not ongoing treatment’ This service is run by the general psychiatrist I saw 2 years ago who doesn’t know enough about ADHD, or medication for ADHD. I saw him a month ago when he agreed to try me on atomoxetine, but needs to get funding from the CCG. . .I’ve heard nothing, I’ve emailed PALS and his secretary. . . Last week a member of my support group who, in my opinion, has a good case to be assessed for inattentive ADHD, was told by the MH triage nurse that there was no point getting assessed as she can sit still, was dx with anxiety and offered CBT . . so nothing’s changed and it’s possibly worse than it was before. I continue to fight!
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