Neutral Citation Number: [2010] EWHC 1255 (Admin)
Case No: CO/8751/2008
IN THE HIGH COURT OF JUSTICE
QUEEN'S BENCH DIVISION
ADMINISTRATIVE COURT

Royal Courts of Justice
Strand, London, WC2A 2LL

Date: 27 May 2010

Before :

THE HONOURABLE MR JUSTICE SILBER
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Between :

	THE QUEEN (ON THE APPLICATION OF McVEY and OTHERS)	Claimant	
	- and -		
	THE SECRETARY OF STATE FOR HEALTH	Defendant	
	and		
	(1) JONATHAN SIMMS
(2) HOLLY MILLS
	Interested Parties	

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Written submissions received from
(i) Leigh-Ann Mulcahy QC and Lucy Colter (instructed by The Solicitor, the Department of Work and Pensions and the Department of Health) for the Defendant
and
(ii) Irwin Mitchell, Solicitors for the Interested Parties.  
The claimants did not make any written submissions
No oral hearings took place at the request of the Defendant and the Interested Parties 

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Judgment

Mr Justice Silber: 
1.	This judgment relates to claims made by Jonathan Simms and Holly Mills (“the Interested Parties”), who tragically are suffering from variant CJD (“vCJD”), which is a disease for which there is no known cure.  They are survivors of this terrible illness.  As is widely known, one of the most disturbing and distressing events of the 1990’s was the discovery that many young people were suffering from vCJD and 177 people have tragically died of this fatal illness. 
2.	Following the publication of the report into BSE by Lord Phillips in 2000, the Government gave an undertaking that it would, without making any admission of liability, put in place financial arrangements to compensate the victims of vCJD and their families without the need of any of them to prove fault.  Two interim trusts were created in April and December 2001 in order to make interim payments before the Main Trust Deed (“the Trust Deed”) setting up the Trust was signed on 15 March 2002.  The Secretary of State settled the sum of £67.5 million and the Trust was intended to cover the first 250 cases.  Sir Robert Owen, the distinguished High Court Judge, was appointed Chairman of the Trustees, a post which he still holds. 
3.	After problems had arisen in connection with the way in which the Trust Deed operated, principally because it gave the Trustees a very wide discretion, Sir Robert Owen produced in June 2006 a paper which first sets out the difficulties encountered in operating the existing scheme and which second proposed a “radical revision to the scheme”.  The Secretary of State took advice on these proposals which I will refer to as “the radical proposals” from Mr Justin Fenwick QC, who considered that there were “real dangers in pursuing the modifications proposed”.  The radical proposals were rejected and more moderate proposals were duly put forward and they were accepted by the Secretary of State with them coming into force in March 2010.
4.	The six claimants, who are relatives of the deceased victims of vCJD or who are connected with them, brought the main proceedings which related to the Secretary of State’s treatment of the Trustees’ radical proposals for amending the Trust Deed.  The claimants sought orders first quashing the decision of the Secretary of State rejecting the radical proposals of the Trustees and second requiring the Secretary of State to make a lawful reasoned decision as to whether to accept the Trustees’ radical proposals.  After a hearing which took place earlier this year (“the main hearing”) of the claims of the claimants, I dismissed the claim in a judgment handed down on 5 March 2010 with the neutral citation number [2010] EWHC 437 (Admin) (“The main judgment”).
II The Interested Parties
5.	On 8 December 2009, Irwin Mitchell was granted permission by Mitting J to make representations in the main proceedings on behalf of the two interested parties.  Mitting J then explained that “I think there is good sense in allowing the problem raised by Irwin Mitchell to be ventilated”.  The Interested Parties had been treated with Pentosan Polysulphate (“PPS”).  Some written evidence was adduced on behalf of those parties.  They were not present or represented at the main hearing but at my request, inquiries were made of their solicitors Irwin Mitchell as to the relief which they were seeking.
6.	In response, those solicitors stated that the Interested Parties were claiming:-
“(a) 	A declaration that the defendant has, since 2002 unreasonably failed to revise or amend the vCJD Compensation Scheme operated by the vCJD Trust to provide compensation for the cost of gratuitous care to families caring for long surviving vCJD patients receiving experimental treatment.  It could have been recognised that the Compensation Scheme and the complementary National Care Scheme were intended to provide comprehensive care to vCJD victims during their lives and that a time might come when treatment was trialled which would extend those lives, necessitating revisions to the vCJD Trust to deal with the new problems that such long term survival would pose;
(b) 	A declaration that the defendant has delayed unreasonably in failing to revise the vCJD Compensation Scheme operated by the vCJD Trust, since he was informed of the need for a radical overhaul of the scheme by the Trustees in early 2006;
(c)	A declaration that the defendant has treated the issue of compensation for gratuitous care of the families of long surviving vCJD patients perversely and/or irrationally by asserting that the responsibility for providing such compensation lay with the Trustees of the vCJD Trust, when it knew (or ought to have known) that the Trustees had no power or discretion under the Trust to compensate such losses; and
(d)	Such other declaratory, mandatory or other remedy or order as the court thinks fit.”
7.	Unlike the position when the Interested Parties were given leave to be joined, the relief now sought by the Interested Parties is very different from that which was ultimately being claimed by the claimants at the main hearing and which focussed on the rejection of the radical proposals.  The present position is that there is no overlap between the remedies claimed by the claimants at the main hearing and that now sought by the Interested Parties.  There are three important respects in which the Interested Parties’ remedies do not arise out of the case as actually argued by the claimants at the main hearing.  First, the remedies sought by the Interested Parties, unlike the remedies sought by the claimants at the main hearing do not depend upon a contention that the Secretary of State should have adopted the radical proposals.  The Interested Parties’ case is that there was a separate obligation to revise the compensation scheme but not resulting from such a proposal by the Trustees.  This claim is based on a separate obligation which ceased to be part of the claimant’s final case at the main hearing because the claimants’ case based on a free-standing duty on the part of the Secretary of State to amend the scheme independent of any proposals by the Trustees pursuant to clause 34.1 had been abandoned before the main hearing.  Second, the claim by the Interested Parties that the Secretary of State should have altered the scheme to provide different compensation in respect of gratuitous care for patients undergoing treatment was not part of the Trustees’ “radical proposals”.  Third, the claimants have not argued a case based on compensation for gratuitous care for living victims receiving experimental treatment which is not surprising as the claimants in the main action were not living victims of vCJD.
8.	The Secretary of State had no notice in advance of the main hearing that this relief would be sought by the Interested Parties.  In those circumstances, it was agreed at the main hearing that the Interested Parties should be asked to state first how and why this Court had jurisdiction to deal with this claim which was so different from that claimed by the claimants and second the bases of their claims.  It was agreed that when this information was obtained and the other parties had been given an opportunity to comment on it, consideration was to be given as to how, if at all, the claim of the Interested Parties can and should be pursued.  In those circumstances, it was premature to say anything more about these claims in the main judgment.
9.	The Interested Parties duly served a skeleton argument to which counsel for the Secretary of State responded in writing.  It has been agreed by all parties that there should be no oral hearing and that I should deliver judgment solely based on those written submissions and that is what I am now doing.  The claimants have not made any submissions on the claims of the Interested Parties or the Secretary of State’s response.
10.	The issues which have to be considered are:-
(i)	whether this Court has jurisdiction to deal with this claim of the Interested Parties which is so different from the relief claimed by the claimants (“the Jurisdiction Issue”); and, if so,
(ii)	whether the claim of the Interested Parties should succeed (“the Merits Issue”).
III The Jurisdiction Issue
11.	The case for the Secretary of State is that this court has no jurisdiction to deal with the claim of the Interested Parties because it is so different from the relief claimed by the claimants.  In response, the Interested Parties contend first that the relief sought by them is not distinguishable from the original case or the case presented at the hearing by the claimants and second that in any event the court has an unfettered discretion to make such an order and to grant such relief as it considers appropriate in relation to the issues it had before it.  
12.	In my view it is necessary to bear in mind the limited circumstances in which an entity can become an Interested Party because CPR Part 54.1(2)(f) states that:-
““Interested Party” means any person (other than the claimant and the defendant) who is directly affected by the claim”.
13.	Thus it seems to me clear that the role of an Interested Party is limited to making submissions in relation to the main claim but only to the extent that he or she is not merely affected by it but is “directly affected” by it.  Apart from this, the Interested Party has no role or entitlement to be involved in that judicial review application.  If the main claim is altered so that the Interested Party is not “directly affected” by it, then the court will cease to have jurisdiction to hear the Interested Parties’ claim.  In essence, the right of the Interested Parties to remain in that capacity in a judicial review application is dependant on them being “directly affected” by the claim.  So once that pre-condition ceases to exist, the right of the Interested Parties to be involved in the judicial review application comes to an end.
14.	In consequence in my view the court does not have jurisdiction to hear the present claims for the Interested Parties for at least four reasons.  First, the Interested Parties are not “directly affected” by the main claim because at the relevant time which was at the time of the main hearing, the claim of the Interested Parties did not arise out of the relief sought by the claimants at the outset of the substantive hearing.  As I have explained in paragraph 4 above, all the claims of the claimants at the main hearing related to the decisions of the Secretary of State in relation to the Trustees’ radical proposals and did not concern the totally different relief now sought by the Interested Parties.  
15.	Second, any independent and discrete claim by any party in a judicial review application requires permission (see section 31(3) of the Senior Courts Act 1981 which was formerly the Supreme Court Act 1981).  Also CPR 54.4 states that:-
“The court’s permission to proceed is required in any claim for judicial review whether started under this section or transferred to the Administrative Court”.
No such request for permission by the Interested Parties has been made in this case and so I have no power to deal with this matter.  I stress that the reason why permission is required is that the claim of the Interested Parties is a separate claim and totally different from the main claim.  For the purpose of completeness, I should add that I would have refused permission if it had been requested for the reasons set out above and in section IV below.
16.	A third reason why I do not consider that the court has jurisdiction to deal with the claim of the Interested Parties is that there is no provision in the CPR which enables an Interested Party to make an independent discrete claim against a defendant.  It is noteworthy that there is nothing similar in judicial review proceedings to the provisions which enable additional claims to be brought in ordinary civil proceedings enabling a defendant to counter-claim against a claimant and enabling a defendant to make an additional claim against somebody who is not a party to the action (see CPR Part 20.4 and 20.7).  A fourth reason is that the Interested Parties have failed to put forward any authority or reasoning to show that I have jurisdiction.
17.	I should also add that even if I am wrong and an Interested Party can bring a claim against a defendant, I doubt if this can be heard separately and independently from the main claim because the essence of the claim of the Interested Parties is that they are “directly affected” by the main claim and in particular the assertions of the claimants.  Here the Interested Parties are making a discrete claim.  For each of those reasons, I have concluded this claim must fail.  I should add that in their skeleton, the Interested Parties contend that if, it turns out to be the case that it is concluded that it is not entitled to declaratory relief, “there can be no objection to the court expressing its conclusions on the issues raised by the Interested Parties”.  The court needs to have jurisdiction for it to give decisions because without jurisdiction, it cannot hear a claim or express a conclusion.  As Lord Fraser explained “Judicial Review is made effective by the court quashing an administrative decision without substituting its own decision” (R v Entrance Clearance Officer Bombay ex parte Amin [1983] 2 AC 818, 829a-b).  A court cannot merely give advisory opinions in response to a judicial review application especially in which the court has no jurisdiction to deal with a claim of the Interested Parties.
IV The Merits Issue
(i) Introduction
18.	In case I am wrong on the jurisdiction issue, I will briefly deal with the substantive challenge of the Interested Parties to the vCJD Scheme.  At the heart of the Interested Parties’ case is the contention that there is an obligation on the Secretary of State to change the vCJD compensation scheme.  This was set up by way of a Trust and the Secretary of State’s express power to agree to or to reject proposals by the Trustees for amendment derives from clause 34.1 of the Deed which states that:-
“34.1	The Trustees shall no less frequently than once in every calendar year consider whether the trust powers and provisions conferred upon the Trustees by this trust instrument are adequate to enable the Trustees to act for the best interests of the beneficiaries and if in the opinion of the Trustees such trust powers and provisions are not adequate the Trustees may by deed with the written consent of the Secretary of State amend vary or alter such trust powers and provisions. Provided that such amendment variation or alteration may not remove any benefit to which any such beneficiary is or has become entitled prior to the date of any such deed.”
19.	It will be seen that the trigger for any decision to amend the Trust Deed must come from a proposal by the Trustees but no proposals have been made to provide living victims being treated with PPS with compensation for gratuitous care or any of the changes to the Trust Deed sought by the Interested Parties.
20.	Thus, in the absence of an express power in the Trust Deed to vary the terms of the vCJD trust, the only other ways in which the Interested Parties could succeed is if they could establish first there was a free-standing power on the part of the Secretary of State to amend the Trust Deed in relation to living victims in the absence of any proposal from the Trustees that this should be done, second that the Secretary of State had a duty to exercise such power and third that it was irrational or Wednesbury unreasonable for him to have failed to do so.
21.	As I will explain, the careful and impressive written submissions of counsel for the Secretary of State have satisfied me that the Interested Parties have failed to establish any of these matters.
 (ii) No Free-Standing Duty to Amend the Trust Deed
22.	Although the claimants originally contended that there was a free-standing duty on the Secretary of State to amend the Trust Deed, this contention was not pursued at the main hearing.  As I have explained, the claimants sought at the main hearing to rely on clause 34(1) of the Trust Deed but that can only be triggered if there is a proposal from the Trustees to the Secretary of State.  None has been made in respect of the Interested Parties’ claims.  The contention of the Interested Parties must be that such a duty or power on the part of the Secretary of State to amend exists irrespective of the wording of the Trust Deed as otherwise it is difficult to see how the failure of the Secretary of State to amend can be challenged.  This argument cannot succeed because by setting up a Trust, the settlor (who in this case is the Secretary of State) ensures that the legal title to the subject matter of the Trust is vested in the Trustees and the Interested Parties have not identified any provision in the law of trusts which allows Trust Deeds to be amended in the way the Interested Parties contend should be the position in this case.  In any event, as I will explain, even if there is a free-standing duty or power to amend the Trust Deed, there is nothing irrational about the failure of the Secretary of State to invoke it, especially as so much of the claimant’s treatment is already funded as I will explain.
(iii) The Cost of the Treatment with PPS is NHS Funded
23.	It has been explained in the witness statements of Mr Conor Golden on behalf of the Secretary of State that the Interested Parties’ treatment with PPS is funded by the National Health Service and no contrary evidence has been put forward to show that this is not the case.  Indeed in any event in so far as there is a dispute on the evidence, I am obliged to accept the assertions of the Secretary of State as the Respondent in the absence of strong evidence to the contrary, as I have explained in paragraphs 25 to 35 of the main judgment.  It must be stressed that the scheme set up by the Trust Deed was a gratuitous scheme and was entered into without prejudice to the rights of the victims of vCJD to bring common law claims.
(iv) The Decision to Make Provisions for Care Through the Care Fund 
24.	When the scheme was set up and agreed to by the legal representatives of the families (which included the present solicitors for the Interested Parties) care for vCJD living victims was provided through a wholly separate mechanism in the form of the Care Package provided by the Care Fund irrespective of whether they undertook treatment with PPS.
25.	It is correct that it was not contemplated at the time when the Scheme was set up that a very small number of victims might subsequently have a prolonged life expectancy as a result of treatment with PPS but this does not mean that it was irrational for first either the original policy decision to deal with care through the Care Fund which funds the Care Package or second not to amend the Trust Deed to make provision for gratuitous care for such victims even if, contrary to my conclusion in paragraph 22, there was power to do so.  It must not be forgotten that the threshold for showing irrationality is high as it has to be shown that the power has been “exercised in a manner which no reasonable [person] could consider justifiable” (per Diplock LJ in Luby v Newcastle-under-Lyne Corporation [1964] 2 QB 647, approved by the House of Lords in Wandsworth LBC v Winder  [1985] AC 461, 505-506)
26.	One of the reasons why it was not irrational to revise the vCJD scheme was that the Care Fund and Care Package was equally as appropriate for providing for the needs of those vCJD victims who had a potentially extended life expectancy as a result of their treatment with PPS as it was for those with vCJD who were not treated with PPS.  
27.	Another factor of importance is that there is no limit imposed on the length of time for which an individual victim can continue to receive the benefit of the Care Fund.  This is significant because the Interested Parties’ challenge fails to appreciate the financial benefits to which the living victims of vCJD are entitled and do receive through the Care Fund and the Care Package.
(v) The Adequacy of the Care Fund
28.	I agree with counsel for the Secretary of State that the written submissions of the Interested Parties ignore the significance and role of the Care Fund and the Care Package, which are integral parts of the assistance given to provide financial assistance for long-term care.  The Care Package is administered by the National CJD Care Team which is based within the National CJD Surveillance Unit.  It is intended to supplement the local health and social care provisions for people with vCJD and it ensures that they are provided with what is unavailable on the National Health Service but what is clinically and practically necessary for CJD victims, including those with vCJD.  
29.	Thus the fund can be used first for additional nursing or social care support, second for any major housing adaptations needed to ensure that a patient is nursed at home, third for the purchase of equipment needed by CJD patients, fourth to pay for the cost of night sitters or other carers in the private sector and fifth to enable respite care to be provided.  It is critically important to appreciate that the length of time for which a victim of CJD may benefit from the care package is not limited and so the living victims of vCJD (such as the Interested Parties) can realistically expect to receive benefits from the Fund for the rest of their lives.
30.	There is clear evidence from Professor Knight the Director of the NCJDSU (which is the National CJD Surveillance Unit) that the National Care Package provides all care that is considered clinically and practically necessary for CJD patients, which includes 24 hour commercial nursing care where this is considered necessary by the caring professionals.  It is noteworthy that Professor Knight is not aware of any lacunae in the overall care package provided for any individual patient although obviously there may be differences of opinion between on the one hand what the professionals might assess as necessary and appropriate and on the other hand the views held by the families.  Nevertheless that does not enable a successful application for judicial review to be made because as I have explained in paragraph 25 above, the threshold for an irrationality challenge is high. 
(vi) Compensation claim to date on behalf of Holly Mills 
31.	The evidence shows that the Mills family failed to take advantage of two sources of funds which would be available to them.  The first is that they claimed only the Basic Sum payable under the Trust Deed of £120,000 but they have made no further claims.  Second, they only claimed £90,224.16 from the National Care Fund and they have not applied for any sum in respect of commercial nursing care as they have chosen to take care of Holly themselves.
32.	In those circumstances, I cannot accept the complaints made that she has been adversely affected by the failure to revise the Trust Fund so as to provide financial compensation in respect of gratuitous care bearing in mind that she and those caring for her are entitled to funding through the National Care Package for all commercial care which is considered clinically necessary by the health professionals.
33.	Although the parents of Holly Mills prefer to care for Holly themselves without commercial care, this is their decision made by them with full knowledge of the fact that there is no compensation for gratuitous care under the Scheme but that they would be entitled from the Care Fund to as much commercial nursing care as was and is clinically necessary and appropriate.  So she and her parents have not taken advantage of an alternative remedy and that is an additional reason for refusing her relief.  The failure of the Care Fund to pay gratuitous care for Holly Mills is not surprising as Holly Mills could have brought a common law claim in respect of compensation for gratuitous care.  The claim of Holly Mills must fail also because she has not claimed a fraction of the sums to which she is entitled.
(vii) Compensation Claim to date by Jonathan Simms
34.	Jonathan Simms and his family have received very substantial payment from both the Trust from which he has received a total of £270,797.51 compensation and from the Care Package for which he has received a total of £497,797.39 in respect of care and equipment, excluding most of the nursing care which he received in 2009.  Jonathan Simms’ challenge appears to be on the basis that there has been a failure to amend the Scheme to provide in addition to the amounts already received payment for gratuitous care for which his claim must be relatively small in the light of the value of the commercial nursing care which has been provided.  
35.	Thus I agree with counsel for the Secretary of State that it cannot be irrational in those circumstances for the Secretary of State to fail to amend the Scheme (even if he had the power to do so) in order to make financial provision for Jonathan Simms who has received financial benefits of almost £800,000.  I stress the high threshold for establishing irrationality.
(viii) The different positions of the Interested Parties and other CJD victims
36.	The challenge of the Interested Parties is also put on the basis that living victims treated with PPS are a special category, who should therefore receive compensation for gratuitous care.  The distinguishing feature of such victims is said to be that they may as a result of PPS treatment live longer than expected but that is not universally correct because some untreated vCJD victims have lived longer than average.  I accept the contention of the Secretary of State that it is not irrational to fail to provide gratuitous care to families of patients with PPS compensation which has not been provided to other vCJD victims who are often living with the disease for many months or years.
37.	The complaint initially made by the solicitors for the Interested Parties on their submissions at point 5 of the 7 December 2009 document was that the Interested Parties were not dealt with in the same way as the victims of iatrogenic CJD caused by infected human growth hormone but that contention fails to take account of the different backgrounds to their claims.  The settlement in the Human Growth Hormone litigation followed a contested trial and a judicial decision of liability made against the Government in respect of certain claimants infected through human growth hormone.  In consequence the compensation for gratuitous care was paid because there were settlements of common law liability.  Obviously there is a clear difference between this scheme and the ex-gratia compensation scheme set up for the vCJD victims which was of course made without prejudice the rights of claimants to bring claims.  This is a crucial difference.
V Conclusions
38.	As I have explained I do not consider that the court has jurisdiction to determine the Interested Parties’ claims but even if I did, the claims would fail for the reasons which I have sought to explain.