Cradle Song

Sleep, sleep, beauty bright,
Dreaming in the joys of night;
Sleep, sleep; in thy sleep
Little sorrows sit and weep.

Sweet babe, in thy face
Soft desires I can trace,
Secret joys and secret smiles,
Little pretty infant wiles.

As thy softest limbs I feel,
Smiles as of the morning steal
O'er thy cheek, and o'er thy breast
Where thy little heart doth rest.

O the cunning wiles that creep
In thy little heart asleep!
When thy little heart doth wake,
Then the dreadful night shall break.

William Blake

Dr Sunil Pullaperuma

Thursday, 9 February 2012

For those of you that don't know, I live in London, UK and we have here a funny little system called the National Health Service (NHS).  I call it funny, because it is a JOKE.  If people can afford it, they go private ALWAYS because the NHS is so bad.  People take out loans and second mortgages to avoid the NHS.

So, what's the alternative?  Private Doctors!  Great, right?

WRONG!  So, so wrong.  It seems the private doctors know that people who see them are in most cases DESPERATE.  So what do they do?  They drag things out as long as possible, make you come back again and again for unnecessary appointments etc.  I'm not talking about ONE doctor here.  I'm talking about ALL private doctors.  Or at least most.  I have had a few very rare and very welcome exceptions in the last nearly seven years I have been living here.

Now, onto the title of this post: Dr Sunil Pullaperuma.  I'm too angry to write a full account of this right now, and I need to get in touch with lawyers, the Ombudsman and things like that, but I will give you the last bits of our correspondence (by the way, GOSH is the Great Ormond Street Children's Hospital, and they're great.  They do a lot of good for kids and both my children have yearly check ups for other issues there.  My issue is with the doctor not the hospital.):

Dear Dr Pullaperuma,

I am writing to say I am very disappointed with the EEG my son received.  We had discussed doing a longer EEG (24 hour ambulatory), which you said would be impractical and proposed instead a three hour EEG.  What we received from the GOSH was about an hour's worth of EEG recording.  My main concern when I first got in touch with you was that I wanted accurate results that would not have to be repeated.  Everything I have read about EEGs for children on the Spectrum suggests that at an EEG of at least 6-8 hours should be performed if one desires an accurate reading.  Not only that, but I was informed that the EEG would cost over 350 pounds for three hours and instead it seems we are expected to pay that amount for a third of the time! 

Yours sincerely,

Dear Mrs
I am sorry to here [sic] that you are disappointed with the EEG appointment. The Great Ormond Street provide the best EEG service in London particularly with their recording and reporting service  This is a well known fact all over the world.

It is also known that one could diagnosed [sic] most epilepsies by a normal EEG and rarely need a 24 EEG. If this EEG  is normal we will need to carefully decide before organising a longer EEG [emphasis added] and I can do this after the next week consultation.
Dr Pullaperuma

Dr Pullaperuma,

I am shocked - SHOCKED - by your response.  I hope you are not suggesting the GOSH is the best in the world and provides the most up to date EEG services in the world because this is clearly not the case.  The GOSH's Standing within the UK is of no consequence to this discussion. 

My complaint is that I requested  an extended EEG for my son, was offered a 3 hour one for over 350 pounds and what I received a third of that.  Those are all facts.

When I called you I asked for a 24 hour ambulatory EEG because I told you I DID NOT want to have this procedure repeated as it is very traumatic for my son.  You said a 24 hour EEG would not be "practical".  We then discussed a 3 hour EEG and I expressed reservations about it because I did not want to have this procedure repeated and I did not feel a 3 hour EEG would be enough.  Having read up on it, I know that the standard practice in the US (a world leader in the field of ASD) would have been an EEG of at least 6-8 hours.  I am CERTAIN his EEG will come back normal because I held him in my arms as he slept through the EEG and he slept through with no symptoms whatsoever.

I had explicitly told you repeatedly that under no circumstances did I want to have to put my son through a second EEG because of 1. the financial cost to my family, 2. the emotional cost to my son and 3. the logistical difficulties since I have an 18 month old baby girl who is also being flagged as on the Spectrum.

Please be assured I will be pursuing this through the highest channels.


Dr Pullaperuma,

I am writing to cancel out appointment because I no longer have confidence in you as a doctor.  I feel that you have been dishonest, misleading and I no longer have trust in you as a medical professional.  I no longer wish to have my son under your "care".  I have contacted the GOSH and they will send the EEG results directly to me.  I am cancelling our February 15th appointment and as it I am cancelling before the 48 hour limit, I expect no further charges to be incurred.

Good day.

I'm off now to speak to lawyers about medical negligence and malpractice!  **smiles brightly**


lucidmusing Says:
9 February 2012 at 10:10

you go on girl!!!!!!!

Marsupial Mama Says:
9 February 2012 at 12:13

Thank you!! Have I told you you rock? ;)

Stimey Says:
9 February 2012 at 14:16

Ugh. I'm sorry. This is such a terrible story.

Flannery Says:
9 February 2012 at 17:53

I like your chutzpah. Yeah, I really do.

It seems though, from some of the other blogs I've been reading, that here in the US people are having to do the shorter EEG first, before they are approved or recommended for a second, longer one. Not sure if that's always the case, but I know I've read a few like that.

But he does sound like a fool. He's missing the point of the fact you got a very shortened version of the short one to begin with, and disregarding the fact that it is very trying on your family. Jesus, I hope you can get some results soon, lady. Wishing you good luck and sending positive thoughts.

Marsupial Mama Says:
9 February 2012 at 18:24

Thanks all :)

@Flannery, I see your point about the preliminary testing thing, but that's the thing about going private: you're supposed to be able to cut through all that red tape. That was understood when I made the appointment to begin with. I used those exact words. I was paying for the right to skip those steps.

He understood that and told me that since there are fewer leads in the ambulatory one that is was possible to do it in three hours. Accurately. It was only afterwards I found out about the minimum of 6-8 hours. And only once we got the hospital that we realized we wouldn't get the three hours.

Floortime Lite Mama Says:
15 February 2012 at 14:42

you go girl
his letter to you was really stupid and with wrong spellings too

Marsupial Mama Says:
15 February 2012 at 16:56

I know, right? You'd think being a doctor and all he'd know basic spelling and grammar. But then my last response to him contained a few typos of my own. I just wrote it in a fit of rage and immediately hit send without even re-reading it.

Anonymous Says:
2 November 2012 at 10:58

Hi I'm a mother of three.. and my 2 son is in the autism spectrum. I was planning on channeling this doctor for his advise and all. Can any one tell me if he is good or not. Any update on the above matter. Any help will be much appreciate.

Marsupial Mama Says:
2 November 2012 at 12:23

Hi, I wrote three posts detailing my experiences with this doctor. I have had no further communications with him, other than those detailed through this blog. My experience with him was the worst I've had with any doctor.

I'm sure there are other online reviews you can look at. I would warn though, that after I wrote this series of posts I got inundated by "parents" (grammatical errors and writing style showed them to have the same origin) who defended him. Positive online reviews also started popping up at the same time, so I would watch the writing style carefully to make sure the reviews you find were not all written by the same person.

There are other good doctors in London who could help you, I found the Great Ormond Street Hospital to be the best place for any health issues concerning my children. They provide services for both NHS and private patients.

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The Clod and the Pebble

"Love seeketh not itself to please,
Nor for itself hath any care,
But for another gives its ease,
And builds a heaven in hell's despair."

So sung a little Clod of Clay,
Trodden with the cattle's feet,
But a Pebble of the brook
Warbled out these metres meet:

"Love seeketh only Self to please,
To bind another to its delight,
Joys in another's loss of ease,
And builds a hell in heaven's despite."

William Blake
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