View Full Version : refused funding for maudsley


kingsley002000
02-15-08, 02:59 AM
after many attempts to get my GP to refer me to maudsley I was told that my local PCT had refused the funding. I asked my GP to get in contact with the pct, to which he told me he would not do this without referring me to a local psych first - is this normal

i am concerned about coming accross a psych who does not have a clue about adult adhd and just brushes me off

could someone please advise me on where i go from here

columbo
02-15-08, 05:04 AM
It is normal for you to have to see you local psychiatrist first. They may send you to a psychologist for an IQ test, and maybe for other tests in order to rule other things out. This is important, but can take a few months. Mental health services are not subject to waiting time targets like the rest of the NHS, so it can be a long drawn-out process. Keep at it though.

You may get someone who is clued up, which would be great, but if not, it is not the end of the world. You should be entitled to a second opinion once they are finished.

It is vital you respond quickly to every letter you receive.

Often, the problem arises when the psychiatrist uses an ICD-10 criteria for Hyperkinetic Disorder, which excludes a considerable proportion of Adults with ADHD, rather than the DSM-IV criterea for ADHD. Most psychiatrist view the two diagnoses as the same thing, but it is not the case. I think the new NICE guidelines address this, but they will not be out until August.

Out of interest, what PCT is it? Have you been given a reason for the refusal of funding?

kingsley002000
02-16-08, 12:31 AM
i live in the dagenham area. no reason was given

Destracted_UK
03-18-08, 06:34 AM
As Columbo said, this is a very drawn out process in the UK.

I was eventually referred to the Maudsley and got a diagnosis last year, took me over 18 months from start to finish.

I talked to my GP who wasn't sceptical about Adult ADHD. He was more concerned that a diagnosis wasn't really going to change anything in my life. However he referred me to my local psych.

I recommend you go in there fully 'armed' with a list of how it affects you. Be prepared for the 'everyone gets these things' line. Easy to combat with 'yeh, but not 24/7 etc...' Just remind him that you would not be there if it wasnt affecting your quality of life...

Also ask him how many people he/she has diagnosed with Adult ADHD. I imagine it will be zero. Therefore say you would like to be referred to the Maudsley to have a proper assesment done.

Once you get a letter from this doctor then you are more likely to get your funding from the PCT.

The more you can let your GP and psych know about how it affects you, the more empathy they might have for your situation and then fight that little bit harder to get your funding sorted.

Good luck, it's a real battle. But well worth it. Just dig in and let us know how you get on.

Morrigan
07-02-08, 10:47 AM
We asked for a referral to the Maudsley and were told we had to go through NHS channels. A couple of months to wait for a Mental Health Social Worker, who interviews you and puts you on a waiting list for a Psych (15 months last I heard) who probably knows NOTHING about ADHD, and if they're having a good day they MAY refer to Maudsley after that. Sigh. So we got a GP referral to LANC, 725, and he was diagnosed & medicated within 2 weeks.

It's a lot of money, but well worth it if there's any way you can manage it.
This all happened a couple of months ago and now the GP said he'll prescribe. He did go to another GP in the surgery first, though, who said he couldn't have ADHD because he was 44!!

If you have a problem with that, it's worth directing them to the NHS direct website:
http://www.nhsdirect.nhs.uk/articles/article.aspx?articleId=40&sectionId=10
2/3 of the way down the page it talks about Adult ADHD. It's an NHS site-they'd have trouble arguing with that...

Imnapl
07-02-08, 12:11 PM
He did go to another GP in the surgery first, though, who said he couldn't have ADHD because he was 44!!My daughter was told by a psychiatrist that she would have outgrown ADHD by now - she was only 18!

I can definitely relate to kingsley's concerns because Canada has universal health care and now know that not all "experts" know anything about ADHD.

planetdave
07-02-08, 01:33 PM
I got my funding today *woohoo*! It only took five years, a million visits to my GP, being told by my local psy (twice) that I don't have ADHD, being privately diagnosed two years ago, loads of NHS counselling and FINALLY writing to my MP who put the cat right amongst the pigeons.
I ended up going private two years ago after being refered and then having my funding refused. Unfortunately my private psychiatrist (Dr Hosking) died shortly after diagnosing me - leaving me in a limbo where I'm understimulated and waiting on more attention.
What to do.

Rattle cages. Be a bloody nuisance (pretty easy for an ADHDer:p). Never say die and learn how to embarrass the pros by knowing more than they do. Your PCT has a special committee, the 'Effective Use Of Resources' group that you can appeal to.

Never. Give. Up.

bex7t6
07-11-08, 02:45 PM
God! Now i know what i'm up against. Seen my local psych already and she didn't seem to have a clue about adhd. Said she would speak to her colleague about where to refer me. Ended up calling maudsley myself and asking about the referral process. Called my doctor and asked them to get the ball rolling. Now i realise i may have to fight for funding as well. By the way my son just got a diagnosis aged 13. Also believe my 62 yr old mum has it.

Imnapl
07-11-08, 09:30 PM
By the way my son just got a diagnosis aged 13.This could help you with your diagnosis. My diagnosis was recorded in my son's assessment.

planetdave
07-12-08, 06:10 AM
God! Now i know what i'm up against. Seen my local psych already and she didn't seem to have a clue about adhd. Said she would speak to her colleague about where to refer me. Ended up calling maudsley myself and asking about the referral process. Called my doctor and asked them to get the ball rolling. Now i realise i may have to fight for funding as well. By the way my son just got a diagnosis aged 13. Also believe my 62 yr old mum has it.

As Imanapl says you could be onto a flyer here - if they believe that it's an inherited condition.

But, and I'm going from my own experience and from reports on here, be prepared for the process to be long and very trying.

My first psych visit was a complete washout - he was working from notes he'd had cobbled together by the consulting paediatric psych for him and was dismissive because I'd got that far ( because AD/HDers are low achievers and give up - yeah, right). He therefore pronounced that he was 'pretty sure' I hadn't got AD/HD but admitted there was something amiss that he couldn't pinpoint. Wanker!

Recently I went back to the same hospital - I was looking for help in having my treatment tweaked since it was unfinished. The previous psych had retired and they had a fresh young one in, surely a 'good thing'.

But no. This one decided that I thought I was 'intellectually superior' ( I work as a baggage handler so I'm semi-skilled blue collar and covered in crap :rolleyes: ) and that because I had a bunch of 'O' levels and had worked as a driving instructor then I could obviously concentrate and if you can concentrate you can't have AD/HD. Riiiiight :rolleyes:

She recommended I be taken off my low dosage of ritalin and put on a mind numbing tri-cyclic.

I've seen numerous GPs and plenty of assorted NHS support staff and always appear to be the first adult they have seen with AD/HD - not a surprise if the NHS is hell bent on not diagnosing it. They universally don't have a clue.

Good luck and come back to tell us how you do. Diagnosis is do-able. But be prepared for multiple setbacks and ignorance.

Imnapl
07-12-08, 11:18 AM
Unbelievable, isn't it? I was so lucky to be able to see someone who actually knew what ADHD was on the first go round. I was new to this and had no idea how rare that probably was. Someone up there gave me a break for a reason.

x Alanna x
07-16-08, 11:14 AM
the NHS are fooking ****.

i waited for about 7 months then i decided to go private, i cant be arsed waiting any longer, its costing me like 250 pound to get diagnosed

i have my appointment in august

goodluck though, hope you get diagnosed soon :D

columbo
07-16-08, 06:55 PM
250 is good. If you don't mind me asking, where are you getting an assessment that price?

LadyUK
07-20-08, 04:01 PM
I had to see a local shrink (Hull and East Yorkshire PCT) or two for over a year, who were convinced that ADD doesn't exist and I was manic depressive, before they would refer me to Maudsley.

Once I got the refferal, it was smooth sailing from there - I met all of the criteria for ADHD, and my mom even gave interviews over the phone about my childhood (I am originally from the USA).

Good luck - I wish you the best!

Colin
07-24-08, 03:49 PM
I live in st albans, and ive been though the mill for the last 13 years,
not realisng about adhd till long after i was overcome with debilitationg tiredness, while trying to push myself to cope with my self employed/company accounts wich were 3 years late, ie had neve been done at all.

Im now so worn out that despite finding a private psyh on this forum thats only 20 miles away i cant see Il have enough energy to get there, and so far hes said he doesnt do visits.

i dont supose theres one closer to st albans ?
how do people even find these specialists ?
I found it on this suport group but they must of found it somewhere.

ive had it all, the excuses from the local NHS etc, but finding the new nice guidlines was encouraging.

my notes are full of nonsense, due to the lack of knowledge and misconectipions wich were worse 13 years ago, and this is a sticking point. it took the last psych 2 hours to read, then he didnt bother lisstening to a word i said about how i fit the criteria for adhd and was off the scale for most of the icd symptoms, and met the citeria for all the others for inatentive type. i could go on but im sure you can imagine the picture.

the current result is to try fob me off with other conditions wich im sure dont apply, this times its aspergers and asociated things, ive been refered to the maudsly clinic for that now but they havnt even been able to give me one single symptom that ive got that suficiently warants that condition. it seems strange the adhd clinic didnt seem to know enough about aspergers to tell me how they thought I might have it, and I suspect the aspergers clinic has no expertise in adhd.

Im wondering about a couiple of things said here and that is how the
"Effective Use Of Resources" comes into it,
and how someone manage to get their MP involved?
last time I asked he said he couldnt interfere !
weve got a new MP now at least.

or if anyones got any other ideas about how to realy help id love to hear.

the usual advice i get seems to be limited to change gp, or find a suport group, or make a complaint etc.. all of wich ive been through.

my last medication was 8 years ago from a private doctor on harly street.
he had a heart atck and when the medication stopped the nhs have refused to accept 3 private diagnisis of adhd.

the clinicians who have said adhd doesnt exist have managed to persuade other specialists ive just got drug seeking behavour etc, hence my one shot at the maudsley was scuppered, they didnt even seem the slightest bit interested to take into acount i was on medication when I saw them.

any complaints ive made have just simply been replied with "our doctors assure us theyve done everything corectly".

is there any profesional organisation that helsp people get the medication the need from the nhs? ive tried advocay too, but tbh i dont think they even beleived I wasnt just after drugs, and said well its not licensed to start with.

Lawyeres dont seem interesed unless theres prroof of loss that they can claim money for but i just want to get what I suposedly have a right to, wich is a good state of health.

(ps too tired now, hope this makes some sense)

planetdave
07-24-08, 04:06 PM
That was me with the MP. I was so sick of the NHS merry-go-round that I wrote to my MP and he must have written to my PCT and other organisations. I had previously been refused funding to anywhere but my local hospital - the ensuing panic when they had to report back to the MP ensured that I got funding from the safety net of the 'Effective Use Of Resource' group for a referral to SLAM.

They tend not to tell you about the EFOR because they fear a deluge of claims - but if you need funding and it doesn't come from the normal pot then this is the last place you visit (on the NHS).

Imnapl
07-24-08, 04:06 PM
Welcome, Colin. It sounds like you've been on quite the journey to confirm a diagnosis. I am very concerned that you are too tired to be able to travel twenty miles to see a doctor. Have you had a complete physical recently?

Colin
07-24-08, 05:15 PM
thanks for the reply, i had a quick google for that Effective use term, but think it apears in a lot of diferent contexts, like the uk treasury etc.

I estimate my un necessary cost to the country exceeds 500,000 and thats just for simple things like benefits and loss of income tax. i cant estimatre the cost of the 3 long psych hosp stays, and 100s of totaly innefective consultations, do you think that would interest my MP enough to come and see me?

ive seen my gp twice recently, wel he came to see me, last time with a psych too, every time they come they say how concerned they are but never seem to do anything about it.

trouble is when I get wound up by being told "im not being denied the medication" lol, i istantly get a surge of adrenalin and that makes me look wide awake and full of energy. but that kept me going for a while now im sudenly finding the after effect leaves me so weak indeed.

even writing these posts its so hard to start, but then i find ive writen a long post but then find i cant focus enough to proof read it back.

the tiredness is secondary to adhd somehow, or maybe cuased by the same thing that cuases adhd too. medication cures the tiredness and adhd at the same time. yet they refuse to acept its something they should prescribe.

unfortunatly despite being incredibly fit in the few years before I became so tired, the last 8 years I have been so inactive due to finding it so hard to even stay awake, ive ended up so inactive and my fitnes level is ridiculosly low virtually zero, i dont think its any other serious cuase.

when i say tired i mean like drowsiness, half asleep etc, narcolepsy was ruled out long ago, but not b4 they tried ritalin wich was an eye opener, made me realise how normal people could do things like .. well virtual everything that wasnt intensly stimulating. I didnt hear about adhd untill nearly a year later.

Its a shame i just read Dr Hoskings died, he diagnosed me too. He was intimidated by my local psych tho, who said adhd didnt exist and i was just after drugs, and seems to have later not been keen to defend his diagnosis.

planetdave
07-24-08, 05:36 PM
Dr H had a tough year in 2006 - it was then he was being sued for malpractice and it looks like the stress of that killed him.

That was the year he saw me - you?

Colin
07-24-08, 05:55 PM
oh my, i saw him long before that maybe about 1996/7. i remeber vividly i first went to my gp in mid 1995.

must of been hard for him, he seemed such a nice chap, although I must admit he seemed a little confused at times, and got things about my case muddled up a bit too easily, but I think he was quite old.

I agreed with his diagnosis though. but no one else seemed prepared to acept it even existed, that must of made him in a tough position to start with.

what was the nature of the malpractice ?
is it likely to make his diagnosis of adhd he did for me then be queastionable?

quite some time after they withdrew the medication he started me on I saw Dr Mivart Thoams in harley street, unfortunatly he retired about a year later after a heart atack and again I was without meds just before 2000.

I felt like life had got the bettor of me and had no fight left.
8 years i survived, somehow, feeling kinda like i would just end it all next week somehow, but never got round to it.

eventualy recently i realised I was never going to be able to do that, and couldnt put up with doing nothing any longer, various things happened too wich just gave me that do or die trying attitude i seem to have ended up with now, although i dont think ive got the energy to try hard enough to end up dieng lol.

planetdave
07-24-08, 06:21 PM
He failed to detect a rare disorder in a Maltese baby and they had his ***:-
"It was alleged on behalf of Luke that Dr Hosking failed in his 'duty of care' to diagnose dihydropteridine reductase ("DHPR") deficiency, a rare form of phenylketonuria ("PKU"), when the family came to the UK for a second opinion."






1996, eh? It's likely that he didn't have confidence then because AD/HD in adults was groundbreaking. When he saw me he was confident as hell (2006) but I do score extremely highly on written tests for ADD.

Colin
07-24-08, 06:30 PM
wow thats so totaly obscure, he was a child psychiatrist at the time i beleive.
at least its nothing to touch his reputation for adhd then.

its a shame i never went back to see him, but I think my local nhs had the knives in it for me anyway by then, i saw some of the letters, and one letter that scupered my visit to the maudsley asked for it not to be shown to me lol as "he might say its prejudiced the outcome" it also went on to cite the number of complaints I had made and would probably make about anything they did or said..

ofc i complained about this letter but by then it was uslesss. the muadlsey said they wernt pursuaded by it,,, yeah right, like sure there gona be anything but very reluctant to diagnose adhd to someone who they have been told just has drug seeking bahavour and would lie about symptoms...