Has anyone made a formal complaint about their pct?

vikki_louise

A very long story cut extremely short I have an application going with the pct for funding for treatment, it's been a battle for over 18 months. They have in my doctors word 'set a task they know is impossible' as they keep saying they need to see the evidence from research, they have had it explained by various people that there is no research for the condition or any treatment but the treatment is in line with the NICE guidelines, even one of the top specalists in the country has added a letter saying he believes it could really help me.
They are doing this to get out of helping me and are now closing down in 4 months, what can I do? Someone in the House of Lords read an email from me and passed it onto the health minister there kindly but I don't know what to do, where to turn to or anything. I've been bedbound for over a third of my life but it seems that life isn't worth £50,000 to my pct, who funded someone with the same conditions who had had it a lot less time and a lot milder nearly 3 times the amount I'm asking for very similiar treatment in a similiar time frame at a more expensive hospital. I'm so fed up.
Any advice much appreciated, thank you

KxMx

Your local MP may be of more use than the Health Minister.

Errata

they have had it explained by various people that there is no research for the condition or any treatment but the treatment is in line with the NICE guidelines

NICE guidelines are built on research, so it does exist and can easily be found through the NICE website. Having said that, guidelines are simply that - guidelines.

clemmatis

vikki_louise wrote: »

They are doing this to get out of helping me and are now closing down in 4 months, what can I do? Someone in the House of Lords read an email from me and passed it onto the health minister there kindly but I don't know what to do, where to turn to or anything. I've been bedbound for over a third of my life but it seems that life isn't worth £50,000 to my pct, who funded someone with the same conditions who had had it a lot less time and a lot milder nearly 3 times the amount I'm asking for very similiar treatment in a similiar time frame at a more expensive hospital. I'm so fed up.
Any advice much appreciated, thank you

You can complain to the Ombudsman though only after you've complained to the PCT (have you written to their Complaints Manager?), but the Ombudsman's Office may advise anyway.

http://www.ombudsman.org.uk/make-a-complaint/how-to-complain

And -- I agree with KxMx -- try your MP.

miduck

Errata wrote: »

NICE guidelines are built on research, so it does exist and can easily be found through the NICE website. Having said that, guidelines are simply that - guidelines.

I agree, plus of course funding is far tighter than it used to be.

miduck

sliverman wrote: »

Me I did in July 2012!

(1) failure to diagnose properly - said it was arthritis, turned out to be a blocked artery in my leg - clot in groin+clot behind knee+clot at ankle.Told by A&E after 12 months of agony that I could have lost my leg!!
(2) GP refused to enter info onto the medical records - senior partner dictates that whenever a patient says things about restricted mobility or care needs they must be treated as suspicious as likely main reason - patient is making a claim for a welfare benefit and requires GP support. Independent medical opinion must be sought first to establish truth of matter.

Result:

The PCT put in place an arbitrator, paid by the NHS to sort matter out. meeting took place in Nov 2012- 3 GP's, practice manager, senior partner and the NHS arbitrator AND me!

Talk about walking into the lions den! It felt as though I was being interrogated by all of them as to whether I was telling the truth about anything I had complained about.

GP records stated that I had not said anything and the arthritis diagnosis was conveniently brushed under the carpet. The NHS arbitrator came over as the mouthpiece of the GP practice!

After an hour I walked out with nothing resolved so I have put it aside and will carry on. At least I know where I stand with my GP - not funny really considering that I have been with them since 1998.

Please take this with a pinch of salt - sliverman is a well known troll. I have sat in on commissioning appeals and they have always been balanced.

I would echo the advice of those suggesting you contact your MP and the ombudsman for support, also if there are any charities that cover your condition they may be able to offer advice or an advocacy service.