Post by jeff on Oct 22, 2009 15:17:56 GMT
So I sent a letter off to my MP, here it is:
Dear Theresa May,
I am writing concerning what appears to me to be a significant shortfall in this country of the assessment and treatment of adults with Attention Deficit and Hyperactivity Disorder (ADHD).
I have recently been assessed for dyslexia, and because of an extreme deficiency of working memory which the tests uncovered it was suggested that I consider ADHD as a possible explanation for some of the problems I have been experiencing. I was told that I should try and get a referral to a specialist medic from my GP, but this is proving incredibly difficult, and from doing research online and reading internet forums, it seems that my situation is far from unique. All across the country people are finding it near-impossible to be seen by appropriate specialists, are being misdiagnosed, or, once diagnosed, are finding the systems in place for treatment wholly inadequate.
Although ADHD is a condition most commonly associated with childhood, population surveys estimate the prevalence of ADHD in adults to be between 3 and 4% (Faraone & Biederman, 2005; Kessler et al., 2006), and can be severely harmful for the person affected. It leads to impairments in major life activities, including social relations, education, family functioning, occupational functioning, self-sufficiency, and adherence to social rules, norms, and laws.
ADHD is characterized by an inability to concentrate, chronic procrastination and sluggish mental processing. Adults with ADHD commonly report a history of erratic academic performance and often underachieve academically compared with the expectations and achievements of their family. There is an increased level of substance use disorders among individuals with ADHD. Early onset and persistent antisocial behaviour is commonly associated with ADHD. Untreated ADHD in adulthood can also lead to coexisting conditions including personality disorders (particularly antisocial and borderline), bipolar disorder, obsessive-compulsive disorder and, to a lesser extent, psychotic disorders.
Despite the seriousness of the condition and its prevalence, opportunities for assessment and treatment are ridiculously limited. There are very few specialist services in the NHS. (The Berkshire Healthcare NHS Foundation Trust, for example, only offer services for children with ADHD, there is not even a mention of ADHD affecting adults on their website). There is a vast amount of anecdotal evidence online of GP’s with major gaps in their knowledge of the issues surrounding adult ADHD, as well as ADHD generally, and in some cases even dismissing the existence of the condition entirely. Perhaps most shockingly, however, is the fact that currently in the UK there is no medication intended for the treatment of ADHD licensed for use with adults, despite being considered safe and effective for children (p.34, NICE Guidelines), and despite medication being outlined in the NICE Guidelines as the first stage of treatment. Adults diagnosed with ADHD are finding it incredibly difficult to get hold of the appropriate medication as GP’s are understandably wary of prescribing off-licence.
I urge you to write to the Secretary of State for Health, the Rt Hon Andy Burnham MP, and anyone else you think appropriate, asking when it is expected that the recommendations in the NICE Guidelines will be fully implemented, when the necessary drugs for treatment will be properly licensed, and what is being done to educate GP’s and PCT’s about adult ADHD.
I would also greatly appreciate any advice you have to offer about trying to get an assessment, could suggest anyone else you think it might be useful writing to.
And please consider signing and supporting this petition petitions.number10.gov.uk/adhdadults/ which asks “that NHS service provisions and funding arrangements for services for adults with Attention Deficit Hyperactivity Disorder (ADHD) are reviewed and revised urgently”.
Thank you for your time.
Yours sincerely,
jeff.
I got one back quite quickly just saying that she sent it off to Andy Burnham, and then today I got another one with the reply she'd received.
It's from Phil Hope, as he's apparently the minister responsible. It's a pretty rubbish reply to be honest.
The letter basically seems to say that it's not very common in adults, that the DSM-IV and the ICD-10 don't include adult ADHD, and that only in a few cases does it continue into adulthood. Then he tells me about the NICE guidelines.
One thing I didn't know though is that if NICE recommends a treatment local NHS organisations have to provide funding for it, so I should get in touch with NHS Berkshire East to complain to them. Anyway, here's the reply:
So what do you guys think? Should I write back to him?
Thanks
jeff
Dear Theresa May,
I am writing concerning what appears to me to be a significant shortfall in this country of the assessment and treatment of adults with Attention Deficit and Hyperactivity Disorder (ADHD).
I have recently been assessed for dyslexia, and because of an extreme deficiency of working memory which the tests uncovered it was suggested that I consider ADHD as a possible explanation for some of the problems I have been experiencing. I was told that I should try and get a referral to a specialist medic from my GP, but this is proving incredibly difficult, and from doing research online and reading internet forums, it seems that my situation is far from unique. All across the country people are finding it near-impossible to be seen by appropriate specialists, are being misdiagnosed, or, once diagnosed, are finding the systems in place for treatment wholly inadequate.
Although ADHD is a condition most commonly associated with childhood, population surveys estimate the prevalence of ADHD in adults to be between 3 and 4% (Faraone & Biederman, 2005; Kessler et al., 2006), and can be severely harmful for the person affected. It leads to impairments in major life activities, including social relations, education, family functioning, occupational functioning, self-sufficiency, and adherence to social rules, norms, and laws.
ADHD is characterized by an inability to concentrate, chronic procrastination and sluggish mental processing. Adults with ADHD commonly report a history of erratic academic performance and often underachieve academically compared with the expectations and achievements of their family. There is an increased level of substance use disorders among individuals with ADHD. Early onset and persistent antisocial behaviour is commonly associated with ADHD. Untreated ADHD in adulthood can also lead to coexisting conditions including personality disorders (particularly antisocial and borderline), bipolar disorder, obsessive-compulsive disorder and, to a lesser extent, psychotic disorders.
Despite the seriousness of the condition and its prevalence, opportunities for assessment and treatment are ridiculously limited. There are very few specialist services in the NHS. (The Berkshire Healthcare NHS Foundation Trust, for example, only offer services for children with ADHD, there is not even a mention of ADHD affecting adults on their website). There is a vast amount of anecdotal evidence online of GP’s with major gaps in their knowledge of the issues surrounding adult ADHD, as well as ADHD generally, and in some cases even dismissing the existence of the condition entirely. Perhaps most shockingly, however, is the fact that currently in the UK there is no medication intended for the treatment of ADHD licensed for use with adults, despite being considered safe and effective for children (p.34, NICE Guidelines), and despite medication being outlined in the NICE Guidelines as the first stage of treatment. Adults diagnosed with ADHD are finding it incredibly difficult to get hold of the appropriate medication as GP’s are understandably wary of prescribing off-licence.
I urge you to write to the Secretary of State for Health, the Rt Hon Andy Burnham MP, and anyone else you think appropriate, asking when it is expected that the recommendations in the NICE Guidelines will be fully implemented, when the necessary drugs for treatment will be properly licensed, and what is being done to educate GP’s and PCT’s about adult ADHD.
I would also greatly appreciate any advice you have to offer about trying to get an assessment, could suggest anyone else you think it might be useful writing to.
And please consider signing and supporting this petition petitions.number10.gov.uk/adhdadults/ which asks “that NHS service provisions and funding arrangements for services for adults with Attention Deficit Hyperactivity Disorder (ADHD) are reviewed and revised urgently”.
Thank you for your time.
Yours sincerely,
jeff.
I got one back quite quickly just saying that she sent it off to Andy Burnham, and then today I got another one with the reply she'd received.
It's from Phil Hope, as he's apparently the minister responsible. It's a pretty rubbish reply to be honest.
The letter basically seems to say that it's not very common in adults, that the DSM-IV and the ICD-10 don't include adult ADHD, and that only in a few cases does it continue into adulthood. Then he tells me about the NICE guidelines.
One thing I didn't know though is that if NICE recommends a treatment local NHS organisations have to provide funding for it, so I should get in touch with NHS Berkshire East to complain to them. Anyway, here's the reply:
So what do you guys think? Should I write back to him?
Thanks
jeff