My pain management refered me to Dr Caroline Mckenna from the Tavistock unit. I went and saw her on the 21st of November and had a full psychiatric assessment. This is her letter, anything in CAPITALS is something that is incorrect and i will mention after the letter:
" I saw Reece on the 21st of November 2014. I was familiar with the background history following our discussions and recent conference call with Dr Laurent, Consultant Paediatrician and Alana Kyte, Physiotherapist. I have now spoken with the school and local CAHMS.
I will not repeat the background information in detail as it is well documented. Reece's history is complex. Two Years ago he was diagnosed as having Autistic Spectrum Disorder. He also has a long history of anxiety and has been KNOWN TO CAMHS SINCE THE AGE OF SEVEN OR EIGHT YEARS. He continues to take Fluoxetine 20mgs daily.
In August 2013 he and his mother were involved in a road traffic accident following which he developed low back pain which has persisted and for which he has had investigations, an admission a paediatric unit and TO A AND E. He has been prescribed various drugs. The situation has continued to deteriorate such that Reece's school attendance has dropped off very significantly (TO 25%) and he is USING A WHEELCHAIR WHEN OUT OF HOME. The working diagnosis is of non-specific back pain associated with deconditioning. I understand that an MRI of his whole spine showed an incidental finding of A SMALL SYRINX in the cervical region.
Additionally Reece has a high BMI and achieving and sustaining weight loss is difficult.
FROM REECE'S PERSPECTIVE UNTIL HIS PAIN IS CONTROLLED PHARMACOLOGICALLY ANY OTHER PAIN MANAGEMENT STRATEGIES ARE NOT RELEVANT TO HIM. HE SPENDS HOURS READING UP ON DRUG TREATMENTS/COMBINATIONS/SIDE EFFECTS ETC. HIS IDEAS ARE FIXED AND HE IS UNABLE TO HEAR ANOTHER PERSPECTIVE AND NO AMOUNT OF TIME OR EXPLANATION WILL AT PRESENT SATISFY HIS NEED TO DISCUSS ALL HE KNOWS ABOUT MEDICATION AND WHAT HE THINKS MIGHT BE BEST FOR HIM. HE DESCRIBES HIS PAIN AS BEING '9 OUT OF 10' INCLUDING WHEN WITH ME BUT THIS WAS NOT BORNE OUT BY HIS DEMEANOUR OR BODY MOVEMENTS.
Reece told me that he has always wanted to study medicine. In his view he is being held back from potentially achieving the necessary high grades in his GCSE levels (due to sit this year) BY DOCTORS NOT ACCEDING TO HIS REQUEST FOR MORE OR DIFFERENT PHARMACOLOGICAL TREATMENTS.
I was interested to hear a description from Reece and his mother that had i met them in the early part of 2013 they both would have reported a busy life doing many activities together - bowling, swimming, golf, eating out and going to the cinema. All of this has stopped since the car accident in August 2013. Reece informed me that there is a claim pending. He initially stated that he wanted to make sure that he got as much money as possible because of the cost of funding medical school but he retracted his statement and said what he really wanted was not to have pain which I am sure is the case.
Reece lives with his mother and maternal grandparents. For many years he did not have contact with his father and even now sees him perhaps once a year and they do not have a close relationship. Ms Browne has had to alter her working hours in order to spend more time at home as she does not want her parents taking on care of Reece given their age.
When I saw him on his own Reece described SHORT PERIODS OF LOW MOOD OVER SEVERAL MONTHS associated with tearfulness and an ongoing worry that plans are not in place to manage his pain. I was not concerned about his mood when i saw him in the clinic and although his thinking is very concrete and he is intensely preoccupied with his his own agenda his presentation does not fit with an emerging psychosis. HE WAS NOT SUICIDAL but has a previous history of self-harm by cutting that HE RELATED TO STRESS AND BULLYING AT SCHOOL.
Ms Browne is very aware that Reece's preoccupation WITH PHARMACOLOGICAL treatments is extreme and she understands this preoccupation to fit with the diagnosis of Autistic Spectrum Disorder.
I am very pleased that you are currently reviewing Reece's pain medication. He has as you know been on a combination of Gabapentin, MST, Melatonin, Topiramate, Diazepam and Fluoxetine. I noted in recent email correspondence that Reece of his own accord increased his Melatonin from 4mg to 6mg. Although this change in itself is not serious it raises a concern THAT HE MAY SELF-MEDICATE. I was also concerned about the risk that REECE MIGHT BUY MEDICATION ONLINE but Ms Browne thinks she would know if this is happening.
There is no doubt that from Reece's perspective he has disabling back pain but if, as it seems the case, his investigations have not revealed sufficient physical cause, it maybe BE BEST TO CONSIDER HIS DIAGNOSIS NOW AS ONE OF THE SOMATOFORM PAIN DISORDERS with the precipitant being the RTA in August 2013. There is now a very stuck situation with the perpetuation of a cycle of secondary problems - muscular deconditioning, decreased mobility and increased weight.
The key but also the biggest challenge is to alter Reece's expectation around management of his pain and to help plan and effective way forward where he understands THAT NO INVESTIGATIONS ARE INDICATED, THAT IT IS BOTH SAFE AND NECESSARY FOR HIM TO MOBILISE AND THAT NON-PHARMACOLOGICAL TREATMENTS CAN BE VERY HELPFUL. However his rigidity, lack of flexible thinking and intense preoccupation with his own agenda will get in the way of change and may mean that it is COUNTERPRODUCTIVE TO CONSIDER A BRIEF IN-PATIENT REHABILITATION ADMISSION AS THIS COULD REINFORCE AN ILLNESS PARADIGM.
It may be in the first instance a piece of work could be undertaken with Reece as an outpatient perhaps here or through his local CAMHS.
Once I have had further discussion with CAMHS colleagues, I will arrange to meet with Reece and his mum again to decide the best way forward.
I will write to you again in due coarse
[Her letter Signature etc.]"
1) I've been known to CAMHS since I was 10 or 11
2) I was in and out of A and E all the time not admitted to it and was in the paediatric unit 3 times
3)My school attendance is below 25%
4) I only use a wheelchair at school or on very very long trips (apart from that i don't go out)
5) It is not a syrinx it is an Undissipated Central Canal
6) I don't care how my pain is managed as long as it is managed however i know that pharmacological therapies combined with other i.e. physical therapy or psychiatric is more effective. That does not mean i don't want psych help etc. without drugs.
7) My pain is 9 out of 10 daily and i didn't move barely at all in the meeting so how could body movements factor in and my demeanour was "Do something NOW"
8) It doesn't matter to me if it is my opinion on which treatment i have or theirs which is offered they aren't offering any. THAT IS WHY.
9) The low mood isn't low mood it is diagnosed clinical depression and it is not over short periods it's constant
10) I am suicidal i said "I wish i had died in the crash" and also said " I wish i was dead because i can't live with this"
11) I did not relate it to stress and bullying i said it was caused by my depression, suicidal tendencies and stress [back then]
12) Again doesn't have to be pharmacological but i do believe it should be a combination
13) I would not self-medicate. I had upped the dose of Melatonin because when i was prescribed it I was told I could take 2mg-6mg. I couldn't and still can't sleep so tried upping it for a few days to 6mg (LIKE I AM ALLOWED TO)
14) I would never buy medication online, it's stupid. You don't get what you order if i ordered anti-histamine i would probably get histamine
15) SOMATOFORM ILLNESS!!!!!! (I'll come back to this)
16) No investigations are indicated. I am still in pain, yes? yes They still don't know why, yes? yes does that mean they should do investigations to find out? Yes
17) I know that it is safe and necessary for me to mobilise but i can't because my legs don't respond properly which is why i need intensive inpatient rehab
18) IT IS NOT AN ILLNESS PARADIGM I AM ILL AND IN PAIN DAILY
Somatoform illnesses, for those that don't know, are illnesses where the patient feels the symptoms and is not trying to get attention. It is a mental illness where you feel a physical illness that has no physical cause.
This diagnosis is stupid!!!! For a start the person that came up with the diagnosing criteria for it admitted that they would cause over half the world to be mislabelled as having them. In other words this is a misdiagnosis and because of this dumb b*tch they might take away all of my meds!!!!! My medication don't even control my pain as it is, imagine me without them completely!!!
Why do doctors hate me? Why do they want me to be in pain? Why won't they do anything for me? WHY ARE THEY ALL SO TERRIBLE
PLEASE HELP ME