Thursday, 1 April 2010


Before C was 18 I was always able to give parental consent to things. Now he is an adult – I can’t. It hasn’t been an issue till now.

We went to the dentist (hospital dentist that we waited over 6 months to get the appoinment)! And no surprises C did not let the dentist anywhere near him.
C has gum disease (you can see it when he gives one of his enormous smiles) Teeth cleaning he can’t do himself and depending on his mood depends how long he will tolerate a brush in his mouth. Diet over the years has been very poor. And he has acid reflux (which affects teeth as do some medications). He does not always show when he is in pain. I explained all this. But the dentist was very negative.

The NHS has a responsibility to ensure equality of provision of care to all groups in society. There is published evidence that people with disabilities are at risk from higher levels of oral health problems, they tend to have fewer teeth, more untreated decay etc.

So if they know this - why so evasive? Maybe the look of horror on the dentists face when she saw C head banging explains it?!

A week later the dentist got back to us and has called an in best interest meeting.  To see if it would be in C’s best interest to have a general anaesthetic or just to leave him till he tells us he has a problem. But of course we would somehow have to work out that it was his teeth making himself injure.

We also have to prove C’s lack of capacity in making a decision. It is assessed on if he cannot do one or more of the following: (He cant do any)
Understand information given to them about the decision.
Retain the information for long enough to make the decision.
Use or weigh up the information as part of the decision making process.
Communicate their decision by any means such as talking, sign language or blinking.

This is from the Mental Capacity Act (MCA DOLS) which were introduced in 2005 after a man with autism and learning disabilities was prevented from leaving hospital. His carers took the case to court where it was found he was deprived of his liberty unlawfully. So to prevent further breaches and provide legal protection for vulnerable people who may need to be deprived of their liberty in their best interests, the MCA DOLS were put in place.

There is an easy read version here which actually uses a case like C’s and they did agree to a GA. I know there are risks attached but trying to look at it from C’s point of view the risks from his head banging are greater.

So if C is granted this we are also going to ask ‘permission’ to cut his nails.
If C were a real person  he would have the same privileges as neurotypicals and not have to prove his capacity or have best interest meetings (in 2 months time!). Or have to ask to cut his nails! He would just be treated.
When C reached 18 as he cannot manage his own financial affairs I applied to the DWP to be his appointee and manage his benefits. It was very straight forward. (I also applied for a passport and a joint bank account before he was 18)

(UK) Power of Attorney, this must be set up with the persons consent whilst they have the capacity to choose who they would like to appoint.
If this is not possible a different process is followed and you need to apply to the Court of Protection to become a Deputy.
But there is a bit of a back log.
~ ~  ~
Can I ask – do people who work with your child know that you blog? Did you tell them or did they find out? Has it changed their relationship with you? C’s home maybe finding out I blog from an article that I have written and I know they get the publication. So should I be open with them??

And no C hasn’t said anything else :(