Help needed

[crocker]

Just had word this morning that Curtis's new treatment has been refused funding.His doctors have been trying to change the boards mind all week.The reason they gave is because it is unlienced but they use it in England unlienced so why not in northern Ireland.This was a last change to try to get rid of the horrible norovirus and now there is nowhere else to go.What can I do to try and get this drug .I will do anything and I mean anything to change this

[bamber]

I am so sorry to here that I am not sure exactly what treatment it is. But all I can think of is going to the papers for publicity as to how it will affect Curtis. But there is a post code lottery with lots of different treatments unfortunately.

There maybe NHS channels you can use I know in England there is PALS but not sure how much use they are. Patient Advice and LIasion. But looking at the website don't think they are in Northern Ireland. Maybe they have something similar for you.

NHS Choices seems to cover you as its all the NHS. But not sure of the details try this
www.nhs.uk/choiceintheNHS/Rightsandpledges/complaints/Pages/AboutNHScomplaints.aspx

[crocker]

Got in touch with my local mla and he is contacting the health minister for ni .On Monday I will phone the medical director and complain and if all that fails I will go to the papers and publicise it all because the treatment my son has had over the years(except the last 2and a half) has been appalling.It is his previous doctor that made him this way and the hospital just Febuary past apologised for the negelct of care he received so the as responsible for his treatment as the neglectful doctor

[crocker]

Sorry meant to put hospital and forgot as I am still seething with anger

[liziJ]

Oh no crocker, I'm so very sorry to hear this. You and Curtis have been through more than enough without having to deal with this blow too. I don't think I have much to offer in the way of suggestions though if you've got someone contacting the Health Minister on your behalf that sounds promising. I was just wondering whether, as a last resort, it would be possible for you to bring Curtis to be treated in London? I have no idea how it all works, but I'm sure someone on this forum will be able to offer more helpful advice.

Thinking of you,
Lizi x

[crocker]

Curtis could be treated at great ormond street but the funding would still have to come from are health board as he will be on it for a year.Looking at Curtis and my sick mum is so tiring at the minute but he has been put through for a child of courage award by his school so I am so proud of him so I my just shake myself and fight on

[liz2mac]

Hi Crocker,
I am most willing to take this up for you on behalf of UKPIPS, but I need your permission in writing. I can ask our PR member to help you and I will approach the Northern Ireland Health Minister. If you would like me to do this, please email me at 'A PID Organisations Email'.
Liz

[crocker]

liz i have the local mla on the matter and am ringing the medical director on monday.The mla is going to take the matter straight to the health minister himself.The 2 doctors curtis is under are still fighting and are not giving up and will back me up 100 percent.Iwill let you no how we get on and then if still possible get the ukpips onboard.Iwill try to keep my head high but every corner you turn it just let downs all the way and it is getting harder.Curtis has been unwell all week with vomiting and can not has his tube feeds as he keeps vomiting up the tube,but hey i suppose it could all be worse.

[liz2mac]

Oh love, I'm so sorry, what a rotten time you're having. Poor Curtis, poor you. Please don't hesitate to ask if there is anything we can do, any time. Thinking of you all.
Liz

[jonmac]

Hi, Crocker
I've no idea when you'll see this message - but I hope it's soon. Liz2mac is very anxious to contact you by email or even phone but we don't have your email address as this is understandably locked away with the Administrator. We don't have your contact details either. Liz is away for 3 days on UKPIPS business and I'm holding the fort in her absence. Can you please call me on 07770 923191 as soon as you can? I don't want to say any more on this Forum but we need to talk soon for your own and Curtis' sake.

Cheers, Jonmac (UKPIPS)

[liz2mac]

Good news for Curtis. The treatment his Immunologist has recommended has been given the go ahead by the powers that be! Great news and we wish Curtis and all of his family all the luck in the world.
Liz

[glowing]

Fantastic news! Wishing Curtis and his family all the best.
Glowing