Has anybody had any sucess in representing a child with PKU, In particular a child under school age. If so can you advise me what tactics you used.
I have successfully represnted a boy of 7years with PKU. but have 2 other cases, one a girl of 2 years and the other a boy of 3 years. They are about to be listed for appeal Obviously the 'substantially in excess' is being applied, whereas I feel that decision makers (and DLappeal panels) are needing to take the broader view i.e. that the PKU childs medication is their treatment and requires close scrutiny

Would you also be arguing that ensuring adherence to the very strict diet that is required is also an activity far in excess of which would be required with a normally healthy child of the same age - the younger the child the more they would need watching to ensure they didn't eat foodstuffs that weren't allowed - whether that would come under the heading of attention or supervision is another matter, as would the question of whether it would be substantial enough to warrent middle rate Care........Wikerpedia seems to have an interesting page on the condition which might well be of use.....

With very young children who are under close supervision it's only likely to be a problem if there are other children with whom they associate (older sibs to young to understand the problem). With an only child not yet able to ferret out forbidden foods it might be different, It is certainly different once they go to school and there is a risk of lunchbox-sharing.

There is also the argument about the disgusting food supplement that PKU children have to be given and how long it can take at mealtimes to get enough into them to give them enough for proper growth. Have you ever smelled it? Even with pineapple flavouring, it's truly vile.

What's PKU?

Courtesy of www.nspku.com.................

...........Phenylketonuria (PKU) is a rare inherited condition in which there is a build up of phenylalanine in the body. Phenylalanine is a natural substance; it is a building block of protein. PKU is looked for in all newborns in the United Kingdom by measuring phenylalanine levels in the heel-prick blood test. All babies should have this test as it allows treatment to start early in life.

PKU is a treatable condition. Phenylalanine is found in the protein part of the food we eat. The treatment is a low protein diet. This means that high protein foods such as meat, cheese, poultry, eggs and milk are not permitted. Instead the diet is supplemented with artificial protein which contains no phenylalanine. This diet is very effective at lowering levels of phenylalanine and allows normal growth and development of the child.


....impressive huh ?

Have a look at CDLA/2188/2001.

At paragraph 9 of this decision, Commissioner Powell, wrote:

'…… He must be supervised closely so that he eats exactly the right amount of the right things at the right times. Indeed, the amounts which he eats have to be carefully calculated. Further, great care must be taken to see that he does not eat even very small amounts of foods which he should not eat. If he does eat something which he should not, this must be noted and remedial action taken. Such action will often involve adjusting what he eats at the next meal or subsequent meals. I find as a fact that, because of those strict dietary requirements, the claimant requires continual supervision throughout the day in order to avoid substantial danger to himself. Of course, all children of the claimant’s age require continual supervision. However, the claimant, because of his condition and the need to ensure that there is rigid adherence to his diet, requires a greater level of supervision than other children of his age. Section 72(6) is therefore satisfied. Putting it simply, it must be extremely difficult and involve a lot of supervision to ensure that the claimant does not eat a sweet or a biscuit or a packet of crisps when he should not.'

Rather than referring the matter back to another tribunal the Commissioner actually awarded middle rate care for a further five years in this case.

I hope that this helps.

I should have added that the child concerned in the above case was 5 years old at the time. Again, I hope that this helps.

I should add to the helpful explanation of the condition that the threat from PKU is that an excess of phenylalanine in the blood causes irreversible brain damage leading to mental retardation. Until the dietary control method was introduced and the problem understood, this must have been one of the commoner causes of learning disability (the incidence is about 1 in 15,000). Until a few years ago they thought that the problem stopped once the brain is fully developed, and people with the disorder were allowed to eat normally once they had reached full development. These days the doctors are much more guarded and advise even adults to manage their diet with care, though the risk is much higher during the development of the brain.

Although probably applicable to older children - it is not just the monitoring of food intake etc but monitoring the content of different batches of the same allowed product. Because the same processed food product can be produced at several different production plants (poss. in different counties) the content may be different and some batches contain 'prohibited' ingrdients. Equally the exact contents change from time to time. This means parents have to check the contents of food consumed (from the local shop on the way home from school etc) even by reasonably aware older children

this was demonstrated beautifully at a tribunal by a parent who produced several bottles of a well known soft drink purchased from different local shops and highlighting the differing contents declared on the label from one bottle to the next.

and if the parent opens a bottle of the food supplement .....a tribunal cannot fail to understand that the amount of monitoring and encouragement needed to ensure a child consumes the stuff is not substantially in excess .... can they?

middle rate care!

Of course under the principle in Cockburn, shopping doesn't count as attention as it is not carried out in sufficiently close proximity to the person for whom it is done. This is a big headache for the parents of children with PKU.