Letter to PCT, which is slightly tweaked version of the letter to my MP:
Re: Adult ADHD
26th July 2011
Dear Sir/Madam,
I am writing concerning the lack of knowledge and services in Northern Ireland for the diagnosis and treatment of adults with Attention Deficit and Hyperactivity Disorder (ADHD).
I am 26 years old and have a diagnosis of Aspergers Syndrome (AS) and ADHD. I had long suspected I may have ADHD, but the idea was dismissed when I mentioned it to several professionals involved in my care. During my time at university, I had been experiencing severe depression and anxiety, especially during the exam period. My psychologist had been trying to help me by looking at my difficulties from the Aspergers Syndrome angle, but nothing seemed to help. After attempting suicide twice, I eventually had to drop out as I could no longer cope with the stress.
Following this, I decided to research ADHD, as I felt that some of the difficulties I had at university could be attributed to the condition. I was surprised to find that no one in Northern Ireland currently specialises in the diagnosis and treatment of adults with ADHD. So I asked my GP for a referral to a psychiatrist in England, who specialises in the condition. I was told that GP’s can’t usually make out-of-area referrals, and that it usually has to come from a consultant. I was advised to contact my psychologist for a recommendation to be assessed for ADHD; however, she refused to do this.
I still felt strongly about having ADHD, so I contacted a private specialist psychiatrist in London, who advised me to get assessed based on what I had told her about my symptoms and my answers on a questionnaire. My mother and I travelled to London for my assessment in March 2011, where I was diagnosed with ADHD and prescribed medication for the condition. From the first dose I noticed a huge improvement – my mind felt clear, I had energy, I was focused, procrastinating less, etc. I also noticed that my anxiety wasn’t as severe and my emotions felt more under control. My parents also noticed a dramatic change in me.
I am currently in contact with the specialist psychiatrist via phone and email; however, this has some limitations. Firstly is the cost – the assessment and follow-up for private treatment cost £500 and £250, respectively, plus the cost of the flights to and from London. I would have been unable to afford this if my parents hadn’t helped cover some of the costs. Secondly, the specialist cannot send prescriptions through the post to Northern Ireland. Therefore, I am relying on my GP to prescribe the medication. However, she can only prescribe what the specialist had already prescribed. So if I needed to change my medication, I would be unable to as my GP couldn’t prescribe it.
I realise ADHD is considered a controversial diagnosis; however, there is substantial scientific evidence, in the fields of neuroscience, genetics and psychology, indicating that it is a real disorder and that the medication makes a difference in the lives of those who suffer from it (Emond, et al., 2009). In fact, based on this evidence, The National Institute of Clinical Excellence (NICE) issued clinical guidelines for ADHD in September 2008 (CG72). These guidelines state that “specialist services for the diagnosis of ADHD in adults should be available” (6.4, 140). They also state that “ADHD in adults should be considered for all adult mental health problems that appear to start in early childhood and where the specific problems associated with the disorder (hyperactivity/impulsivity and/or inattention) persisted into adult life” (6.7, 143). They also suggest that the assessment should be carried out by a specialist. It is apparent that these evidence-based guidelines are not being followed in Northern Ireland, to the detriment of those who suffer from it.
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. People with untreated ADHD are more likely to suffer from depression, abuse drugs, be involved in car accidents, engage in criminal behaviour, drop out of university, and have difficulty in social relationships and in maintaining jobs (Cox et al., 2006; Gjervan et al., 2011). So it is likely that there are a lot of people in Northern Ireland in need of support, which is not available. While I understand funding may be an issue with adult ADHD services, it is likely that the cost of untreated ADHD is much greater than the cost of diagnosing and treating the condition. Due to my untreated ADHD, I have suffered from depression and anxiety and had to drop out of university before finishing my degree. Perhaps if services had been available I may have managed to graduate.
I have attached information regarding the NICE guidelines, and a document from the Chief Medical Officer Dr Michael McBride. The document says, "DHSSPS advises that this guidance is valid for Northern Ireland and endorses it for
implementation in HSC" and contains this link
www.nice.org.uk/Guidance/CG72 which provides more information and even online training modules for professionals.
I would be grateful if you could let me know if it is possible to be reimbursed by the Belfast Health and Social Care Trust, for the costs of the private assessment, follow-up treatment and travel costs, as it was the only available route to getting a diagnosis at that time.
I would also greatly appreciate it if you could let me know if there are any plans to introduce the NICE guidelines, and if so, how far along you are with introducing specialist services for adults with ADHD in Northern Ireland.
Yours faithfully,