YEAH! T3 & CCG's.. we WILL get change of policy.Read these TWO LINKS. Watch the news tonight! then prepare for ACTION xxx

Go Justice Collins!!!  (read his Wiki pages - impressive, he also reversed a GMC decision  to strike off a professor)

telegraph.co.uk/news/2016/0...

The next link is a review of the decision with excellent lawyer info from top company

hja.net/press-releases/17-y...

needless to say I have fired off an enquiry to them over our cases

happy days x

The Claimant commenced proceedings for judicial review to challenge the refusal as a service development. (aka change of policy)

More than 6,000 people have so far signed an online petition started by Narcolepsy UK about the NHS denying medication for people with narcolepsy.

Where's ours??? please point me if I've missed it or would anyone like to start?

Ian Wise QC and Stephen Broach of Monckton Chambers are instructed by Hodge Jones & Allen LLP for the Claimant with funding provided by the Legal Aid Agency.

The High Court has granted the Claimant and her family anonymity (Order dated 1st September 2015). However the family are willing to speak to journalists on condition the order of the court as to anonymity is complied with. Contact number 07880 706711 ( I have sent a text thanking them for going public and sending our love and support for their daughter and their family)

Better watch the news tonight!!!!

PS

had call back from solicitors, had a chat, they will review links and info I sent and call next week to talk. ( if only the nhs were so efficient)

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  • Thyroid UK is looking into what actions we will be taking in respect of this problem having agreed this at our meeting on Saturday.  If we went down this road, we would need a patient to get legal aid.  The worrying thing is that if that patient was then refused, it would set a precedent for all future cases.  Something to think about though....

  • Hi Lynmynott

    thanks for your reply

    Sorry, could you clarify, have Thyroid UK agreed to actions or have they agreed to look into actions?

    I would hope that specialist solicitors who value their reputation would only proceed with a very good case, especially with a judical review.

    On the other hand a precedent has been set by this ruling, something for the CCG's to think about too (big smiley face)

    kindest regards

    juliat

  • Hi Juliat,

    TUK trustees have agreed that we will campaign and I am just typing up the strategic plan to make it official.  We need a meeting to discuss how to campaign.  This looks like a really good idea and I have pointed the trustees to this thread.

  • It seems there is a difference in that the NHS agreed the drug for narcolepsy was effective but refused to provide.I get the impression that the NHS does not agree that T3 or NDT is effective despite the evidence.

  • Yes I noticed that too.

    BUT BUT BUT BUT BUT

    THIS IS SUCH GOOD NEWS FOR US

    IT confirms my research as the way to go. ( at least to me ;-) comments most welcome )

    NOT INDIVIDUAL FUNDING

    ( although many will have to be refused to build case, because CCG policy states ' if one or more patients with the same condition at the same stage ....requires xxx then a service development should be produced and it not be considered by IFA)

    BUT

    A SPECIFIC NEW  CCG POLICY ( service development) FOR A SUB GROUP ( people who can't get well on T4 alone)

    It helps our case in that a high court judge holding the CCG to account over the following

    the court ruled they HAD TO fund THE ONLY DRUG which had a real prospect of reducing symptoms ( is there anything other than T3)

    the claimaint had tried lots of other drugs with little effect and in some cases negative side effects ( I think we can all emphasise with that)

    The claimaints consultant recommended the drug be tried ( we've had - some of us- been actually prescribed the drug - for years - with reduction of clinical symptoms)

    They used European guidelines to confirm the drugs efficacy - yeah. ( in fact double yeah)

    After a delay in which different NHS bodies disputed responsibility ( ha ha   nobody wants to take responsibility for what the judge said was an UNLAWFUL decision

    NHS funding was refused  on the grounds the claiment is representative of a group of patients who have a similar condition and who could potentially all request the same treatment. ( can you see that we are NOT part of that group. We have to reassure the CCG/NHS we are not opening the flood gates for everyone who's Hypo to get T3 willy nilly. WE have to be classed seperately, as a sub group with a specific service development/policy OTHERWISE WE WILL NEVER GET FUNDING ON AN EXCEPTIONAILITY BASIS AS TO DO SO WOULD MAKE ALL HYPOTHYROIDS 'EXCEPTIOANL'

    NHS THEREFORE CONSIDERED THE APPLICATANTS REQUEST TO BE FOR A SERVICE DEVELOPMENT (DEVELOPEMENT OF A SPECIFIC POLICY FOR A SUB GROUP) AND NOT AN INDIVIDUAL FUNDING REQUEST

    THIS IS KEY!!!!!!!!!

    *******THE CLAIMANT COMMENCED PROCEEDINGS FOR A JUDICIAL REVIEW TO CHALLENGE THE REFUSAL AS A SERVICE DEVELOPMENT.*********

    NHS agreed to review their original decision but then refused FOR DIFFERENT REASONS

    saying she didn't meet the 'exceptioanility' criteria

    so this was the decision that was challenged in high court in front of Justice Collins for a judicial review

    The claimaints where able to use three key grounds (IN THEIR PARTICULAR CASE) to challenge the decisiosn

    * NHS has MISINTERPRETED and MISAPPLIED its policy governing IFA and ought to have accepted that the claimanit met exceptionality criteria

    * UNLAWFULLY DISCRIMINATED against the claimaint as others receive the drug (it can be prescribed for depression, major sypmtom associated with Hypo Tyh)

    *that the NHS had failed to, essentially, care for a patient on a best interests basis AND THE USED UN CONVENTIONS TO BACK THIS up ( OK claimanit was a child but patients have rights)

    the judge used the following words

    (BEAR IN MIND THAT CCG DECISIONS HAVE TO BE SHOWN TO be WHAT A RATIONAL PERSON WOULD DECIDE)

    " thoroughly bad decision" " totally ignored the exceptional position the patient was in"

    "absurd"

    "unlawful"

    "any lay person looking at the facts in this case would NOT take the view that this was a reasonable decision"

    "The only proper course of action... was to provide the drug"

    "perversion of patient care under NHS act

    " decision was totally irrational" CCG'S CANNOT ACT IRRATIONALLY

    he described NHS's position on the case  as "nonsense"

    THE COURT WAS TOLD THE CLAIMANT WAS DETERIORATING WITHOUT THE DRUG

    The legal argument focused on the definition of 'exceptioanility'  of the patient within the cohort of patients as she was getting worse  (and other drugs were ineffective - i've added that bit )

    NHS accepted cost was not a factor

    They challenged saying Indiv Fund. panel refused drug after a specialist applied for it EVEN THOUGH THE ONLY 2 CLINICIANS ON THE PANEL WHERE NOT SPECIALISTS IN THAT FIELD

    YES it did say that NHS agreed the drug was likely to be effective in treating the patient

    BUT surely with the info and evidence we have from years of successful outcomes and specialists applying for continuation of treatment we could argue that too.

    If the drug wasn't effective why have they prescribed it for so long?

    x juliat

  • Juliat, many many thanks for PM.ing me this post re. legal proceedings. You are amazing with the amount of fight you have. x

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