FAQs

1. I suspect I may have ADHD. How do I get a referral to an ADHD specialist for an assessment?

  • Make a 10 minute appointment with your GP and simply say you want a referral to an adult ADHD specialist for an assessment.
  • Take along the list of symptoms (with the relevant ones circled) which can be found in our library here.
  • And a copy of the patient’s version of the NICE guidelines which can also be found in our library here.
  • If you feel up to it, you could write under each symptom, a description of how it has affected your life.
  • Tell your GP that you will ring him in exactly one week’s time to find out how the referral is going.

2. Is there an adult ADHD specialist or an adult ADHD clinic in my area?

  • Please see our list of Specialists here.
  • You’ll notice that the list isn’t very long, because there are not yet many adult ADHD specialists in the UK.
  • If your area is not on the list, ask your GP for an out-of-area referral.  BTW: If anybody knows of an adult ADHD specialist or adult ADHD specialist clinic that is not on our list, could you let us know so that we can keep our list updated?

3. What can I do if my GP refuses to write a referral to an adult ADHD specialist?

  • Make an appointment to see a different GP, and again take with you a copy of the patient version of the Guidelines along with a list of symptoms with the relevant ones circled.  Just in case you’ve lost the first ones, you can download additional copies from our library here.
  • Tell your new GP that you will ring him in exactly one week’s time to find out how the referral is going.
  • Also remember, GP’s are not qualified to assess for ADHD, all they need to see from you is a valid reason for them to request a referral to an adult ADHD specialist and a list of the symptoms should do that. By refusing to make the referral, the GP is in effect assessing you for ADHD and then telling you that you don’t have it. Only a trained and qualified adult ADHD specialist can assess patients for adhd.

4. What will I need to take with me when I see an adult ADHD specialist?

  • Any of the following would be helpful: school reports, exam reports, and written comments from family and friends.
  • It would also be helpful to take the list of symptoms found in our library with the relevant ones circled (you could also ask family members and friends to circle the ones they think are relevant using different colours to distinguish them from your circles).
  • If you feel up to it, you could write under each symptom, a description of how it has affected your life

5. Can I be at university or have advanced degrees and still have ADHD?

  • Yes. ADHD impacts our lives in different ways and to different levels. Being at university or having advanced degrees should not be a hindrance to seeking and getting a referral to an ADHD specialist.  You may want to read the free article “Executive Function Impairments in High IQ Adults with ADHD” which can be found in our library here.

6. I did well in school.  Does that mean I don’t have ADHD?

  • No.  It is possible to do well in school and to have ADHD. It may mean that you worked very hard in school, and possibly harder than your peers.

7. Can I take my ADHD medications abroad?    

  • Some ADHD medications are controlled drugs so for these you will need to apply for a personal export licence if you are going abroad for more than 3 months and will be carrying more than 3 months supply.  You should apply for this licence at least 10 working days before your travel date.  A list of controlled drugs can be found on the Home Office website here.
  • If you are going abroad for less than 3 months and will be taking less than 3 months supply, you will not need a personal import licence.  However,  some countries may have their own import regulations for controlled prescription medications so you should check with the embassy or embassies of the country or countries that you are travelling to or through.
  • The Home Office recommends that you also get a letter from your prescribing doctor which will confirm your name, travel itinerary, names of prescribing controlled drugs, dosages, and total amounts of each that you will be carrying.  It is also a good idea to take a similar letter for any other medications you are taking which are not controlled drugs.
  • You would normally carry the letter in your hand luggage with the medications, but these days it would be wise to check with your carrier before your travel date to make sure that you will be allowed to carry the entire amount in your hand luggage.
  • You can download an application form for the personal export licence and see a list of contacts for embassies and consulates on the Home Office website here.

8. What do you mean by controlled drugs?

  • These are drugs/medications which fall under the Misuse of Drugs Act (this means that the government believes that these are drugs/medications which are likely to be abused).  Under this act, the drugs are arranged into 3 classes (A, B and C) and each class has a different level of penalty for possessing and dealing the drugs.  For example, Ecstasy is a Class A drug which means that if you are  caught possessing it you could get up to 7 years in prison, or an unlimited fine or both.  If you are caught dealing Ecstasy, you could get up to life in prison or an unlimited fine, or both.
  • Unfortunately for us, Methylphenidate (Ritalin, Concerta, Equasym, & Medikinet) and Dexedrine are both categorised as Class B drugs which means anyone caught possessing them (illegally without a prescription) could get up to 5 years in prison or an unlimited fine or both.  Anyone caught dealing Methylphenidate and Dexedrine could get up to 14 years in prison or an unlimited fine or both.  There is a bit more information on the Home Office website here.

9. There isn’t an adult ADHD specialist in my area and my PCT refused to fund an out of area referral for an assessment for potential ADHD. What can I do?

  • You have the right to appeal their decision, and in their refusal letter they should have given you a specified time limit within which you can appeal. If you are still within that time limit, ask your GP to help you request an appeal, and to help you submit written information (e.g. list of symptoms and their impact upon your life, and anything else that we’ve listed in our answers to questions 1 & 4 above ).
  • You can also ask the Independent Complaints Advocacy Service (ICAS) to help you with your appeal.  You can find a list of regional numbers for ICAS on the NHS website here.
  • In addition, you can ask your local MP to help influence the PCT to review its position on funding referrals for assessment for ADHD. You can find your local MP’s contact details on the Parliament website here. A template letter is available in our library here.
  • The appeals panel will meet and reconsider your case, and hopefully they will approve your funding. If they don’t, they must clearly provide you with a written explanation of how they reached their decision.
  • If you’re not happy with the process they used to arrive at their decision, you should ask ICAS to help you submit a formal complaint to the PCT.
  • If you’ve missed the deadline due to your symptoms, ask ICAS to help you file a complaint.
  • Unfortunately, the appeals and complaints process may become arduous, so here are a few tips that may help you get through this:

1.See if there is a support group in your area that will help keep your morale up.

2. Keep a log of names, dates, telephone calls, and keep all paperwork in one place.

3. Find someone who is empathetic to your cause who can act as a witness to the process.

4. Be nice to everybody because it’s important to keep them on your side, but keep on taking it to the next step. Be nice but persistent.

5. Don’t take no for an answer, just keep jumping over all the hurdles put in your way.

6. Do enlist the help of ICAS.

7. Join our forum, and get the help and support of others who have been in a similar situation.

10. I was diagnosed with ADHD as a child. Now I’m an adult, and I’m continuing to have problems. My GP/PCT has refused to refer me to an adult ADHD specialist for reassessment. What can I do?

  • Since you already have a diagnosis, your local NHS trust has a statutory duty under the Equality Act to not discriminate against you by refusing to fund your referral to an adult ADHD service. Enlist the help of your trust’s Patient Advice & Liaison Service (PALs) or ICAS to get the referral.
  • You can find the contact details for your PALs by postcode on their website here.  The contact details for ICAS are here.
  • Even if, when you reached the age of majority, you decided not to pursue further treatment for ADHD as an adult, but now realise that you do in fact need it, your trust still has a statutory duty to make that treatment available to you.

11. I think I may have ADHD. Would it be possible for me to meet someone from your organisation to get some information and guidance?

Unfortunately, we are currently completely unfunded and we are all volunteers so for the time being we are unable to provide in-person help and guidance.

We know that personal interactions are very important and empowering, so we are fostering the growth of support groups around the country. We have a growing list of support groups on our website here, so please feel free to contact those that are closest to you. If there are none, you can talk with others and ask questions on our Forum here.

12. What happens during an assessment for ADHD?

The assessment process should include both a general psychiatric evaluation to gather a detailed history about your childhood and education and your current symptoms and impairments as well as a specific ADHD diagnostic interview.   If needed, the specialist may also order an additional neuropsychological assessment. The specialist will have to rule out any other possible causes for your symptoms before a diagnosis for ADHD can be made.  Since this can be a lengthy process, it is likely that they will send you some forms to complete and bring with you to the appointment.  There is more background information available here.

13. What is a neuropsychological assessment?

It consists of a variety of tests, both spoken and written, that will help give the doctor an accurate description of such cognitive skills as memory, concentration, language, interpretation, and problem solving abilities.  These assessments are usually given by a clinical neuropsychologist who is working with the ADHD specialist.

14. What happens if I get diagnosed with ADHD by a specialist?

You should be given an appropriate written treatment plan, a comprehensive assessment report, information and support for your family and/or carers, and regular follow-up monitoring. In addition, your GP and local Community Mental Health Team (if appropriate) should be given recommendations regarding the management and treatment of your ADHD symptoms. It is your right to receive these, if you don’t get them, ask for them.

15. What is the difference between ADD and ADHD?

Some people use the older term ADD (this term has actually not been used by medical experts for the last 25 years) to describe either themselves or someone else who does not appear to have hyperactive symptoms/behaviours, whilst others rather confusingly use ADD interchangeably with ADHD. The truth is that the name of the disorder has changed over the past 300 years as medical professionals and researchers began to understand the disorder and its impact better.

In 1798, Sir Alexander Crichton on page 272 of his book An Inquiry into the Nature and Origin of Mental Derangement describes a condition which he calls a “disease of attention” as follows:

In this disease of attention, if it can with propriety be called so, every impression seems to agitate the person, and gives him or her an unnatural degree of mental restlessness. People walking up and down the room, a slight noise in the same, the moving a table, the shutting a door suddenly, a slight excess of heat or of cold, too much light, or too little light, all destroy constant attention in such patients, inasmuch as it is easily excited by every impression. . . It gives them vertigo, and headach, and often excites such a degree of anger as borders on insanity. When people are affected in this manner, which they very frequently are, they have a particular name for the state of their nerves, which is expressive enough of their feelings. They say they have the fidgets.

After Sir Alexander Crichton’s “disease of attention”, the disorder  went through a period of being called either “minimal brain damage” or “minimal brain dysfunction”.

In 1968 it was changed to “Hyperkinetic Reaction of Childhood”, 12 years later (in 1980) it was changed again to “ADD (Attention Deficit Disorder) with or without hyperactivity”. 7 years later, in 1987, the name of the disorder was simplified and changed from “ADD with or without hyperactivity” to the generic term “ADHD”, and the term ADD technically expired.

From 1987 up to the present it has been called ADHD. ADHD was further and better defined in 1994 when 3 subtypes of ADHD were introduced as follows:

1. Combined Type: chronic and functionally impairing symptoms of inattention WITH chronic and functionally impairing symptoms of hyperactivity/impulsivity;

2. Predominantly Inattentive Type: chronic and functionally impairing symptoms of inattention WITHOUT symptoms of chronic and functionally symptoms of hyperactivity/impulsivity;

3. Predominantly Hyperactive-Impulsive Type: symptoms of chronic and functionally impairing hyperactivity/impulsivity WITHOUT symptoms of chronic and functionally impairing symptoms of inattention.

Whilst there are currently ongoing discussions around redefining the symptoms and subtypes to better reflect an increased understanding and knowledge of the disorder and its impact, there are no new proposals for changing the umbrella term ADHD.

So in a nutshell, the name ADD has been officially retired for the last 25 years, and replaced by the generic and inclusive term ADHD which includes the Combined Type, the Predominantly Inattentive Type, and the Predominantly Hyperactive/Impulsive Type. We are all ADHD!

For those who would like to read more, a digital copy of Sir Alexander Crichton’s book is available in our library thanks to Google’s Digitisation Project.

16. Can you help me find participants for my research project into ADHD?

We are keen to facilitate research which will benefit people with ADHD and you are allowed to recruit people for research projects by posting on our forum. But, all the following terms must be met and must be clearly stated in your post:

A. Researchers must be at postgraduate level or beyond

B. Your post must include the following 12 items: project title, project description, the project objective, the design/methods of the project, characteristics of required participants, main outcome measures, names & status of researchers, name of funding bodies, names of any other involved organisations, starting date of project, expected completion date, and contact details.

C. You must also include details of ethical approval.

Any posts which do not meet these criteria will be deleted. You will find our Forum here.

Please let us know (using the form at the bottom of this page) if there are questions which we have not covered here so that we can add them to the list.

Review date: 10/06/2012; Next review due: 10/06/2013

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Discussion

7 thoughts on “FAQs

  1. Your FAQs refer to NHS diagnosis, but what about the private route? I am happy to pay out of my own pocket to see a specialist, as I am likely to lose my job if I do not get this fixed asap. My boss is not willing to wait up to a year for me to see someone and my parents are happy to lend me the money, as this has been an ongoing issue. But what is the process of arranging to see someone privately? How do I do this? I emailed the Bristol Clinic, but have not heard back yet. I’m not even sure if they are the right people to contact. Please could you advise? I am in Wiltshire.

    Posted by Artist | January 4, 2014, 3:09 pm
  2. If I have a moratorium health insurance and income protection in place before the official diagnoses of Adult ADHD, would these be valid for claim of ADHD diagnoses and complications.

    Posted by vick | January 11, 2012, 10:48 pm
  3. Will I loose my driving licence due to ADHD or medications I take due to my ADHD?
    Not sure if many people are aware but you need to tell the DVLA if you have ADHD, if your pulled over by the police and they find your medication and question you about it, they may (probably will) ring the DVLA. If this happens you could loose your licence and face upto a £1000 fine along with some nasty questions form the police.

    The DVLA assess you on a personal bases its not one diagnoses fits all, they will contact your GP, physiologist and ask them some questions to see if your safe to drive. They will try and get back to you within 90 days. You let them know by sending the M1 form in. More information here: http://www.direct.gov.uk/en/Motoring/DriverLicensing/MedicalRulesForDrivers/MedicalA-Z/DG_185372

    They can revoke/refuse (if your applying for a provisional) your licence if they want or require you to take an assessment or reapply every year or so.

    Apparently taking your licence from you is rare, the most likely outcome is they contact your GP, psychologist and just ask if your ok to drive. Then no restrictions are put on you. although on occasion you will have to undergo an assessment.

    Will having ADHD effect my insurance / change of getting a loan?
    Not always, but insurance company may increase your premiums.

    Something like the above would be nice.

    Posted by Adam | November 7, 2011, 5:32 am
  4. How about a “What can I do if my PCT refuses to fund an out-of-area referral to an adult ADHD specialist?” section?

    Posted by angle | May 2, 2011, 8:44 pm
    • please can you let me know the answer to this aswell, im having problems getting a diagnosis. i had add as a child and having serious problems and need help

      Posted by mark downes | May 3, 2011, 9:39 pm
      • Hi Mark, I’m sorry to hear about your difficulties. Since you already have a diagnosis, I’ve written a separate question and answer in the FAQ’s above (see number 10). I hope this was helpful to you.

        Posted by veillantif | May 7, 2011, 10:00 am
    • Hi Angle thanks for reading the website and for suggesting this question. We’ve now added it (with an answer) to the list (see question 9). I hope this is helpful!

      Posted by veillantif | May 7, 2011, 9:19 am

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