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More Help for UK ADDults
Assessment for ADD/ADHD in adults is still very difficult in the UK. There are only 2 NHS Clinics, one at the Maudsley Hospital in London and one at Addenbrooks Hospital in Cambridge. They will only take referrals from a local health service provider- GP or consultant Psychiatrist. This does mean that they will not take self-referrals or contacts before a referral.
The first step is to speak to your GP and ask for a referral to your local Psychiatrist- there are waiting lists, which can vary in length in each area.
Once you have a referral and an appointment has been made you do need to be prepared:-)
Gather together up to date information including a diagnostic criteria for adults and some up to date research and if possible some old school reports and some evidence of why you feel you do fit the diagnostic criteria - try to keep some sort of diary of how the symptoms in the Diagnostic Criteria affect you and how they disrupt your daily life.
There are still many adult Psychiatrists who believe that children out grow ADD/ADHD and are therefore very sceptical of the condition in adults. It is therefore quite possible that they will disregard any mention of a referral for assessment of ADD/ADHD.
Below are some quote from professionals who were asked about the prevalance of ADD/ADHD in adults which are very interesting and may help when trying to get the professionals to take notice of what you are saying:
The estimated rates of persistence of ADHD into adulthood range between 50 - 60% (Faraone, Biederman,et: Attention deficit hyperactivity disorder in adults; an overview. in Biological Psychiatry, 2000;489-20). In practice however, the rate seem to be much higher.
Ricardo Castaneda, MD, NYU/Bellevue
The problem comes out of semantics. I think of ADHD as a genetic disorder which some circumstantial issues can mimic (alcohol and drugs in utero, concussions, lead poisoning, drug abuse) thus creating "pseudo-ADHD." In this view, you are correct: it is 100% persistent. No one who truly has ADHD "gets rid" of it till there is a way to exchange chromosomes. Some adults cope with it better than others (so do some children!) and don't "need" medication or coaching or education or structure or or or... You can see where this goes--who could not use a little better structure or organization? Who defines how good of coping is "good enough"? What those people are saying when they say X% of ADHD patients have the disorder is that, by the standards of the one judging it, (100-X)% of ADHD patients are doing well enough that they don't need help (again, what is "help"?--would they suddenly develop ADHD again if you took their secretary and Microsoft Outlook away from them?.....)
On the other hand, if you define ADHD by function, you have a moving target that is about as easy to pin down as to nail the proverbial Jell-O blob to a tree.
I go with the 100%.
John I. Bailey, Jr., M.D., Center for Attention & Learning, 829 University Boulevard South
This is when they will look into many other conditions and this is then when you need to politely suggest that they read the literature you have with you and ask if they would at least consider the up to date evidence. You may also ask if they can get in touch with one of the NHS Clinics to discuss things further before dismissing the referral request completely. Hopefully after this (it may mean a 2nd appointment to give them time to look through things) they will try to be helpful and look into a referral. Bear in mind even if they do believe in the condition they still have to get the authority of the local health authority to refer you to one of the clinics so there may still be problems with obtaining the referral. Don't blame them directly if this is the case but talk to them and see how you could maybe help to get the authority to understand the condition in your area.
If however the local Psychiatrist still does not believe in the condition after reading the evidence then you may have to get in touch with the local Health Authority direct.
If you do have to contact the local Health Authority either because the Psychiatrist will not consider a referral or if the Authority has told the Psychiatrist that they cannot refer you then you can start by writing direct to the Director for Mental Health Services at your local Authority or Trust. The best thing would be to get in touch with your local PALS and ask for the contact name for the Director of Mental Health Services and also where they are based so that you can write to them direct.
You need to start by explaining the problem, that you have asked for a referral for an assessment of ADD/ADHD and the local service providers have not agreed to refer you to one of the NHS Adult ADD/ADHD Clinics and that you feel that you do fit the Diagnostic Criteria and that you do not fit the criteria for other Mental Health conditions. Say you are requesting them to look into the problem and for them to arrange the referral for you, explain that you accept that if after an assessment by a doctor at the clinic they say that you do not fit the criteria you would at least appreciate the referral to at least know for sure that this is not the cause of your problems.
It is worth remembering at this point that you try to ensure that you point out the problem and what you want the person you are writing to do in the first paragraph and then maybe go on to give the evidence as to why in the following paragraphs - these are busy people so need to have a good idea in the first paragraph of any correspondence as it is more difficult if they have to read through reams to get to the point of the letter.
It is also worth enclosing evidence such as that prepared for the local Psychiatrist - Diagnostic Criteria, up to date information, up to date research and any personal evidence including old school reports if you have them. However in the main body of the correspondence keep things simple and to the point, it is therefore worth writing something like the following where you mention things and enclose them separately i.e.
"I am requesting a referral for an assessment of ADD/ADHD at one of the two ADD/ADHD NHS Clinics1 as I feel I fit the Diagnostic Criteria2 and have enclosed evidence to this effect3 and some up to date information4 and research5. Then at the bottom of the letter list the items enclosed:
1 Name of Clinics
2 Diagnostic Criteria
3 Personal diary type of evidence and/or school reports
Make sure you also number the pages you enclose so that they match the list you have in the letter.
If you do not get any response in a couple of weeks, either an acknowledgement that your letter has been received, or that the person you wrote to is looking into your problem and they will get back to you when they have completed their investigations, write back to them asking if they received your initial correspondence and if they have been able to read the enclosed documents and ask how they will be able to progress with your request for a referral for assessment. You are entitled to at least ask for an initial reply within a certain time frame - maybe 2 weeks. This at least gives them time to acknowledge they have received the request.
It is also worth at this time considering sending copies of all correspondence to various other members of the Health Authority, i.e. Director for Psychiatrist Services, the Trust Director, Director of Mental Health Nursing, Director of Psychology Services, Director of Patient Services (you can get the contact names and addresses from your local PALS so that you can address all correspondence direct to the person rather than just an office where it may not get to the right person) and maybe also your local MP. Remember to send a covering letter to each and also to enclose all the attachments you enclosed in the first main correspondence all listed correctly. You also need to remember to list at the bottom of each letter all those you have sent carbon copies to i.e. c.c. Name local MP.
If you continue to get no response to any of your correspondence keep going, don't give up. Give it another couple of weeks and then write again to all those you wrote to asking if they have received your letter and how they are going to look into the situation for you. It may be then also worth making an appointment to see your local MP or Patient Liaison people.
Even if it seems you are not getting anywhere DON'T GIVE UP in the end you will be able to get the help and services you are looking for. Try not to get too frustrated with the services - at least try not to let it showJ and try to make those you write to know that even if after an assessment it is found that you do not receive a diagnosis that you will accept this but what you are asking for is the opportunity to at least have the correct assessment by a specialist who is experienced in the condition rather than one who is not, to confirm or rule out the diagnosis of ADD/ADHD.
THE PRIVATE OPTION
There is also the private option, there are a number of private consultants who are experienced in ADD/ADHD and some will take NHS referrals ad work with your local Authority. The best thing to do is to get in touch with a local support group, as they will know if there is anyone in your area or at least the contacts for some specialists in adult ADD/ADHD who will be able to help.
It is also worth considering that if you do receive a diagnosis from an experienced private consultant you may be able to recover costs from your local NHS Trust if it can be proven that they have not been willing to consider an assessment by a qualified experienced consultant on the NHS.
© adders.org 2004
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