In Who’s Best Interest?

G has a sebaceous cyst on his head. His Dad used to get them and apparently they can be hereditary!

Bit annoying really because quite frankly this ‘kid’ has enough issues without inheriting others but hey ho! That’s life I guess and at least there’s no signs of varicose veins yet!

The cyst started out quite small about three years ago. I asked his staff to take him to the doctors to get it checked out, as you would!

Doctor said it was fine, just a sebaceous cyst that would probably grow a little bit and then shrink. I was obviously relieved it wasn’t anything more serious!

He’s been back many, many times over the last couple of years. It has grown and certainly is showing no signs of shrinking. Each time the doctor has said “it’s clearly not bothering him and they won’t remove it for cosmetic reasons.” Each time they have said It wouldn’t be in his best interests to have it removed. And, it shouldn’t get much bigger!!!”

I was pretty upset by this. When Bob had these cysts when he was younger they were taken out as a matter of course…for cosmetic reasons. After all what young man wanted to walk around with a lump on their head that could be easily removed. It was a pretty simple procedure.

I couldn’t help thinking that the rules were different for people like G than they were his Dad. How you look clearly isn’t as important!

That upset me too as I’d always tried to help him fit in/not stand out so much by the way he looked, what he wore and….well, he’s always been so handsome. More than anything though I was also really worried that if it grew then removing it would be a less simple procedure, which certainly wouldn’t be in his best interests!

The cyst, right at the front of his head, above his forehead is huge now! The size of a two pence piece in diameter and growing upwards. We’ve been keeping his hair longer in an attempt to keep it hidden. This worked for a while but now it’s poking through his hair. People are starting to notice now….with comments like “OMG what’s G done to his head!”

The last time his staff took him to see the doctor, he said pretty much the same thing with the added comment… “it shouldn’t get much bigger than a golf ball”

A golf ball!!! – Seriously a bloody golf ball? Golf balls are F***ing huge. Not so much when you are trying to hit it with a golf club (I know because I’ve played golf in the past) but, I certainly wouldn’t want something the size of a golf ball sticking out of my head would you?

Concerned and upset by this I asked the manager of his house to set up another appointment that I could go along too. His staff had reported that he was touching it more (clearly starting to bother him!) and I noticed it seemed to have grown even more than the last time I’d seen him three weeks before, and, it had changed colour!

So on Saturday I met the Doctor.

He started by explaining that operations for cosmetic reasons were not routinely done on the NHS anymore. And, that having this cyst removed would require a general anaesthetic which HAS A RISK OF DEATH!

Deep breath! ……I know this!

I explained that G didn’t always show he was in pain, or he was uncomfortable like other people. When things get bad (much worse than many people would tolerate) his change in behaviour is the only way we know that something is really hurting him. The last time this happened was when he was taking food out of his mouth (even chocolate) and after continually visiting the dentist, insisting it was a problem with his teeth and finally getting them to sedate him to have a good look around his mouth he ended up having two teeth removed. Two teeth that were so rotten I can’t even begin to imagine how much that was hurting him. And yet, all he was doing was taking food out of his mouth!!!…he was still smiling, still going out and having fun.

While we were there G was touching his head, pulling at the cyst. After some discussion the doctor agreed to make a referral …checking with me that this was what I wanted. He would measure the cyst and then find out whether this would need to be a referral to the Dermatologist or the plastic surgeon.

I hesitated….because in my head all I could think of is that I am requesting that my gorgeous boy goes through major surgery with a general anaesthetic that by its very nature is a risk….because actually any major surgery is!

Of course what I wanted was that this had been dealt with before it got to this point. I raised the cosmetic issue and mentioned what had happened with his Dad and was told that the NHS didn’t do operations purely for cosmetic reasons anymore and things had changed. I get this. Money is tight!

I was informed that this wasn’t discrimination because G had learning disabilities and that they wouldn’t have agreed to anyone having this surgery unless the person was in pain. However he also implied that the cyst could have been removed at the surgery, using local anaesthetic for anyone else.

Now! Call me cynical but isn’t this an equality issue?

Even when the cyst was small it’s doubtful any operation to remove the cyst would have been able to have been done for G under a local anaesthetic. He is not great at staying still! But, the operation would have been smaller, shorter and resulted in less recovery time and less scaring for him.

I feel physically sick at the thought of him having to go through this surgery but I can’t help thinking…it would have been in G’s best interest to have removed it sooner and  in who’s best interests has this actually all this been for?



About Oxfordshire Family Support Network

Oxfordshire Family Support Network (OxFSN) is a not-for-profit organisation run by and for family carers of people with learning disabilities – both children and adults. Oxfordshire Family Support Network (OXFSN) was set up in 2007 by family carers who wanted to use their experience to help others in the same situation, based on our belief that family carers are experts by their lived experience.
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2 Responses to In Who’s Best Interest?

  1. wisegrannie says:

    As someone who had a similar cyst removed from the back of my head (no problem, no questions asked, no dire warnings) when it was much smaller than G’s, I think you’ve got a point. When it came to this elderly lady, there was just unremarked acceptance by the referring GP that it was a bit awkward when having a trim at the hairdresser!

    • emptynestmum says:

      Thanks for this Wise elderly lady… different rules clearly for kids like ours. although I’ve since learned that a friends son had one removed (again when much smaller) without all this carry on…sighs x

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