Taking on clinical commission group

[Endlessnine3]

My daughter who is 9 has PKU (http://www.nspku.org/information/whatispku )

today we have recived a letter from the gp saying they can't put certain stuff like choc cake mix and puddings on prescription. As the ccg have said they are luxury items and we will have to pay for them

she has been getting this stuff since she was little
what would be the best way of taking on the ccg and gp ?

It seems neither has a clue about PKU as it only effects one in 10,000 and there are only 2 people in my county that has PKU

we have even been fighting dla for 16 months an have just won as they didn't have a clue about PKU

[des8]

Re: Taking on clinical commission group

I understand that prescribing of borderline foods and dietary products should comply with the recommendation of the Advisory Committee on Borderline Substances (ACBS) who recommend products on the basis that they may be regarded as drugs for the treatment of specified conditions.
The advisory website is here: https://www.gov.uk/government/groups...ine-Substances
The drug tariff referred to is here: http://psnc.org.uk/dispensing-supply...l-drug-tariff/
Part XV can be found here: http://www.ppa.org.uk/edt/October_2014/mindex.htm
Click on XV and list A of borderline substances will drop down.

It is the GP who is responsible for prescribing. They have to use their judgement to make exceptions to the recommendations, based perhaps on a dietician's guidance.
CCG will invariably support the GP
If the products you want are in this list A, I think you could go back and argue the point with your GP.
If you have already been down this route, can the NSPKU not support your approaches to GP & CCG ? I see they have low protein prescription lists.

[MissFM]

Re: Taking on clinical commission group

My daughter who is 9 has PKU (http://www.nspku.org/information/whatispku )

today we have recived a letter from the gp saying they can't put certain stuff like choc cake mix and puddings on prescription. As the ccg have said they are luxury items and we will have to pay for them

she has been getting this stuff since she was little
what would be the best way of taking on the ccg and gp ?

It seems neither has a clue about PKU as it only effects one in 10,000 and there are only 2 people in my county that has PKU

we have even been fighting dla for 16 months an have just won as they didn't have a clue about PKU

Hi Endlessnine3 ,

It's my understanding that the key always seems to be that you must be able to demonstrate that your daughter's needs for this are above and beyond the "norm" - ie that the expense of providing for her in a particular respect is greater than for a child without this condition.

Provisions and benefits do change as children get older and it might be an idea to ensure that you are getting all the financial help to which you are entitled (for example, through the CAB or something like this: http://www.turn2us.org.uk/benefits_search.aspx)

It's hard, isn't it - my advice as a seasoned mother of a child with complex disabilities (read: used empty) is to make a friend of your GP and of the commissioning officers if at all possible and enlist their help to fight "the system".

Good luck xx

[Endlessnine3]

Re: Taking on clinical commission group

Hi Endlessnine3 ,

It's my understanding that the key always seems to be that you must be able to demonstrate that your daughter's needs for this are above and beyond the "norm" - ie that the expense of providing for her in a particular respect is greater than for a child without this condition.

Provisions and benefits do change as children get older and it might be an idea to ensure that you are getting all the financial help to which you are entitled (for example, through the CAB or something like this: http://www.turn2us.org.uk/benefits_search.aspx)

It's hard, isn't it - my advice as a seasoned mother of a child with complex disabilities (read: used empty) is to make a friend of your GP and of the commissioning officers if at all possible and enlist their help to fight "the system".

Good luck xx

Yes her needs are above and beyond the norm as 99% of her food is prescription based and have to be ordered via the chemist

the gp has already had to complain as there budget was being cut because of my daughter but they did win

it just seems so stupid people are deciding what she can and can't have as
if she goes to a party we have to make stuff so she doesn't feel left out
she has already had to have counciling as her condition kept making her upset and left out
and with them withdrawing the cake mix that means she has no cake at Xmas or birthdays

[MissFM]

Re: Taking on clinical commission group

Yes her needs are above and beyond the norm as 99% of her food is prescription based and have to be ordered via the chemist

the gp has already had to complain as there budget was being cut because of my daughter but they did win

it just seems so stupid people are deciding what she can and can't have as
if she goes to a party we have to make stuff so she doesn't feel left out
she has already had to have counciling as her condition kept making her upset and left out
and with them withdrawing the cake mix that means she has no cake at Xmas or birthdays

Yes, it's brutal. Your GP needs to wake up and get onside. I wish I could tell you how to make him do this.

If you are robust (and this is what I did many moons ago, with mixed results) you could go to the press..but they have their own agenda.

If your GP will not take your daughter's side, then maybe change GPs?

[Endlessnine3]

Re: Taking on clinical commission group

My local radio has a phone in with the ccg so I'm ringing them up lol