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Queen's recommendation having been signified
Motion made, and Question put forthwith, pursuant to Standing Order No. 52(1)(a) (Money resolutions and ways and means resolutions in connection with Bills),
That for the purposes of any Act resulting from the Commissioners for Revenue and Customs Bill it is expedient to authorise
(h) any increase attributable to the Act in sums payable out of money provided by Parliament under any other enactment,
(2) payments out of the Consolidated Fund to enable the Commissioners to make payments or disbursements, and
Motion made, and Question put forthwith, pursuant to Standing Order No. 118(6) (Standing Committees on Delegated Legislation),
That an humble Address be presented to Her Majesty, praying that the Double Taxation Relief (Taxes on Income) (Georgia) Order 2004 be made in the form of the draft laid before this House on 17th November, in the last Session of Parliament.[Mr. Heppell.]
Mr. John Gummer (Suffolk, Coastal) (Con): On a point of order, Mr. Deputy Speaker. Have you received a request from the Secretary of State for Environment, Food and Rural Affairs to give an oral report about the two documents published today? She appeared on television and answered a large number of questions from journalists, but no one in the House is able to question her about the fact that we shall meet neither our Kyoto targets nor the 20 per cent. target set by the Government. Today, it has been announced that 43 per cent. of new homes have broken the regulations that she laid down to ensure that they were energy efficient. Surely, the issue should be debated in the House and not on the television and radio.
Mr. Michael Jack (Fylde) (Con):
Further to that point of order, Mr. Deputy Speaker. As Mr. Speaker is always keen that Departments make important announcements to the House first, may I ask you, Mr. Deputy Speaker, to investigate why on this occasion a very important result in terms of our climate change programme was released to the media first, and not to
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the House? Secondly, could you investigate the delays that I encountered today in getting hold of the relevant documents to understand precisely the terms of the announcement that had been made?
Mr. Deputy Speaker (Sir Alan Haselhurst): The first answerto the right hon. Member for Suffolk, Coastal (Mr. Gummer)is that I have received no request from a Minister to make a statement. The House will know that it is up to the Government to decide how they make information available to the House. That is a matter of judgment, and from time to time there will be differences of view about how that judgment is exercised; it is a matter for the Government in each case.
I understand that the documents are available to Members, but if there has been a delay I will certainly ensure that it is investigated.
Dr. Andrew Murrison (Westbury) (Con): On a point of order, Mr. Deputy Speaker. In a reply given during Health questions yesterday by the Minister of State, Department of Health, the hon. Member for Doncaster, Central (Ms Winterton), on the new dental contract, the hon. Lady suggested that negotiations with the British Dental Association were going reasonably well, yet within hours of her making those comments the British Dental Association withdrew. The hon. Lady had plenty of opportunity during subsequent supplementary questionsnot least from meto correct that erroneous impression. Given the collapse of the talks between the BDA and the Government, would it be in order for the Minister to come to the House to correct the erroneous impression she made?
Mr. Deputy Speaker: It would certainly be in order, but it is entirely up to the Minister whether that opportunity is taken. I am sure that opportunities are open to the hon. Gentleman, or his colleagues, to pursue the matter if that is what they wish to do.
Jeff Ennis (Barnsley, East and Mexborough) (Lab): I wish to present a petition on behalf of my constituent, Mr. Eddie Gardner, and well over 3,500 residents of Mexborough in my constituency.
Declares that the proposed use of former care homes on Manvers Road, Mexborough, as a hospital for people with mental illnesses is unacceptable because Cambian Healthcare has failed to communicate with local people during the early stages of the project leading to confusion about its purpose, fear about its suitability and lack of trust in the company.
The Petitioners therefore request that the House of Commons urge the Government to commission an independent review of Cambian Healthcare's proposal.
Motion made, and Question proposed, That this House do now adjourn.[Joan Ryan.]
Norman Baker (Lewes) (LD): I am pleased in one way at least to have the opportunity to raise in the House this evening a very sad case that involves one of my constituents. I want to do the best that I can for my constituent, and I hope that, when the Minister replies, he will be able to give him hope about the way forward to try to deal with his very difficult health condition.
My constituent, Mr. Adrian Patrick, lives in Newhaven. He is a relatively young manhe is only 31and he has been a chef by profession, but he now cannot work because, sadly, he is going blind, which is a tragedy at that age. That is sad, but it is also a matter of anger, however, because the means to keep his sight may be available but its use is being blocked by, of all people, the management of Moorfields Eye hospital.
Mr. Patrick suffers from a condition that is a form of uveitis, which essentially attacks the jelly between the eyeball and the retina, causing a disconnection. Although the erosion is gradual, the effect can be sudden. Such a disconnection can be triggered by something as simple as the individual who is affected bending his or her head in the shower. One eye has already gone, and the race must now be on to save Mr. Patrick's remaining eye. Such is his condition that he is already eligible for blind registration.
I want to run through the chronology of the key events. Mr. Patrick contacted me for the first time on 6 August 2003, when he told me that his consultant, Professor Susan Lightman at Moorfields had, since November 2002, wanted to prescribe for him a certain drug, infliximab, to try to help his eye condition but was being prevented from doing so. I wrote on that same day to the local PCT in Lewesthe Sussex Downs and Weald primary care trustto raise the matter with it, based on the fact that the PCT had been contacted directly by Professor Lightman but had refused to fund the treatment.
The position that the PCT has takenit is a difficult one for itis, as I shall explain, to try to mediate between the different elements of Moorfields Eye hospital. In the response to me on 26 September 2003, the PCT's chief executive, Fiona Henniker, wrote:
"It is not normal practice for a hospital doctor to approach a commissioner direct to ask for money above and beyond the sum already agreed in the service level agreement."
So the PCT wanted approval from Moorfields direct, rather than simply an application from my constituent's consultant. I raise that issue now because it is relevant, as I shall explain later, in respect of a letter that I received from one of the Minister's colleagues, Lord Warner, in considering this matter.
The PCT's position was not normal practice, and one of the questions that I want the Minister to clarify I hope that he is able to do sois the exact relationship between the three elements of the triangle in this sad saga: first, the PCT, the commissioning body in normal circumstances; secondly, the management at Moorfields hospital; and, thirdly, the consultant.
Is it possible for a consultant to secure funds from a PCT if the consultant believes that the release of those funds is appropriate and the PCT is happy to do so; or
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must the PCT always have approval from the management of the hospital where the consultant works? Despite a year and a half of looking into the case, I am still not entirely clear about the legal position in respect of that matter. If the Minister can clarify that in his remarks, I should be grateful. According to the PCT, Professor Lightman subsequently presented a protocol to the drugs committee at Moorfields on the use of the drug infliximab, but that was rejected.
The letter that Professor Susan Lightman wrote to the commissioning manager of my local PCT on 7 February 2003 is relevant to the history of the case. She gave evidence to the fact that infliximab helps uveitis and enclosed several abstracts which suggested that that was the case. So at an early stage, the consultant supplied evidence that the drug could be effective in dealing with the condition.
At the end of a long exchange of correspondence between Moorfields and my PCT, a reply was received from the Adur, Arun and Worthing PCT. My PCT had felt that it should not be deciding the matter and it had been referred to a specialist funding panel. In fact, there was a process error involving my PCT, which took some months to come to light, and that caused a further delay for my constituent.
The reply from the Adur, Arun and Worthing PCT, acting on behalf of my PCT, said:
the Moorfields Eye hospital trust
"to cover the treatment of patients registered with Sussex GPs . . . It is therefore not appropriate for clinical departments to make direct approaches for additional funds. I would like to make it clear that my response is based purely on our contractual arrangements. It does not imply agreement or disagreement to the use of an unlicensed drug for your patient".
In other words, both PCTs have taken the position that they do not want to intervene in whether the drug is used, but to leave it to the management at Moorfields to arrive at a conclusion with the consultant at Moorfields. I shall demonstrate that it has been impossible to reach such a conclusion because the consultant and management have been at variance throughout the process. In the meantime, of course, my constituent is going slowly blind.
I received a reply from Sussex Downs and Weald PCT to my next letter on 13 January 2004. It again reiterated its position. That letter, also from Fiona Henniker, stated:
"This matter is very much an internal one for Moorfields NHS Trust. Unfortunately, Mr. Patrick is the subject of a difference of opinion within Moorfields NHS Trust about how new drugs should be introduced. Moorfields NHS trust has not asked"
At this stage, cost is not an issue. The problem appears to be the suitability or otherwise of the drug. The PCT quoted an extract from the letter that Moorfields sent to it, which stresses that the only issue is whether the drug is appropriate.
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However, the PCT conceded in the letter:
"we do on occasions fund patients who are having unproven treatments, if we are satisfied that this will provide good quality evidence to help in the evaluation of a potential new service."
So, first, the position appears to be that the PCT is prepared to fund "unproven" treatments and, secondly, there appears to be a situation in which the PCT would agree to fund a consultant, even if the consultant's own trust is not willing for that arrangement to take place. That is where the confusion lies. Again, it comes back to the triangular nature of the arrangements between the three participantsmy PCT, the Moorfields trust and the consultant who works for that trust.
Given the uncertainty with the PCT, I wrote directly on 23 January to the chief executive of Moorfields Eye hospital, Mr. Ian Balmer. In my letter I included the following paragraph:
"Can I ask you to set out exactly what the position is that you have reached, and if it is one which is contrary to the wishes of my constituent"
my constituent is happy to have this drug tried; he is aware of the potential side effects but he still wants to go ahead with it
"whether you would now reconsider this issue, given both his direct wish and the views of your own specialist?"
I indicated in my letter the urgency because all the time it is possible that my constituent may go blind almost overnight, given the nature of the condition from which he suffers.
I am sorry to say that my letter did not engender the speedy and considered response from the chief executive for which I hoped. It was with some surprise that I had to indulge in a good deal of chasing up before I received a reply. I am disappointed by the laggardly way in which the chief executive appears to have dealt with the case and with my correspondence. I had to ring his office on 12 March to remind him that I had not had a reply. On 23 March, having had no reply to my earlier phone call a further 10 days back, I had to write to him again. I can assure the Minister that it is not the sort of letter that I normally write. I wrote:
"If I have not received a reply within the next 7 days I shall be raising my constituent's case and your failure to respond to my letters both with the Health Minister and on the Floor of the House of Commons."
That was sent after I had given Mr. Balmer two months to deal with the case of my constituent, who was about to go blind.
Having faxed that letter, there was a reply the same day. He wrote:
by the way, he spells it incorrectly
"routinely in patients with chronic sight threatening posterior uveitis who are unresponsive or refractory to other treatment modalities. In the absence of this evidence, including effectiveness, a formal protocol-driven ethically approved evaluation needs to be conducted for local experience of appropriateness, clinical effectiveness and safety."
So he raised concerns about whether it is appropriate for the drug to be used for this particular condition.
The second bullet point in the letter was as follows:
"There also needs to be a formal agreement with the partner Trust for the administration of the drug infusions. This currently does not exist."
It is true that it does not exist. It does not exist because the PCT has been unable to get one from Mr. Balmer and his management team, notwithstanding the wishes of the consultant. It is rather disingenuous to say that an agreement does not exist when he has been the person, as far as I can tell, who has prevented the agreement from being reached in the first place.
Most depressingly of all, Mr. Balmer writes:
That is not exactly the sort of message that my constituent wants to hear from the chief executive of the Moorfields Eye Hospital NHS trust, the stated purpose of which, presumably, is to help people with eye conditions. It took Mr. Balmer two months to tell me that he could not find a way forward.
I then wrote to the Secretary of State about the matter. I explained the position and in quick timefar quicker than Moorfields Eye hospitalI received a speedy response from the Minister's colleague, Lord Warner, on 21 April. Lord Warner, in his helpful letter, stated:
"You may find it helpful to know that a hospital consultant can prescribe any product, including any unlicensed product, which they consider to be a drug necessary for the treatment of their patients under the NHS. When a patient is being treated at a hospital, the consultant can arrange for the supply of any drug, even one not normally available on NHS prescription, provided that the PCT or NHS Trust agree to supply it at NHS expense."
That offers a wide remit to any consultant. Rightly the Minister continues:
"GPs and hospital doctors are, of course, ultimately responsible for their own prescribing decisions".
It is absolutely right that that should be the case. Lord Warner concludes:
"It is therefore open to Mr. Patrick's consultant to prescribe Infliximab for him if it is considered safe and of therapeutic benefit."
It is clear from Lord Warner's letter that the decision should remain with the consultant. The consultant takes it on his or her head when taking a prescribing decision. That is subject only to the PCT or the NHS finding or funding the supply, and this drug is reasonably expensive. My constituent wonders whether that is an issueeveryone denies that it isin his case.
According to the Minister and the Government, the consultant can supply
"any product, including any unlicensed product which they consider to be a drug necessary for the treatment of their patients under the NHS".
However, the NHS trust for which the consultant works will not supply it and the PCT in my area will not fund it because it does not want to cross the management at Moorfields. As the Minister will gather, we have a drug that the consultant wishes to prescribe, that my constituent wants to try and that, according to the Government, the consultant is empowered to prescribe under the NHS, but its prescribing has been blocked by the management at Moorfields Eye hospital, a body from which we might expect help for people with sight difficulties.
The Minister will realise that I have gone round the houses in an attempt to find a way forward, but each body appears to send the matter to someone else. I asked the PCT to reconsider its decision and, on 5 July, it
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wrote back to me. The PCT in my patch has been helpful and has done its best in a very difficult position between a rock and a hard place to find a way forward. I have no complaints about its approach. Its letter expressed its considered view and said:
"We cannot, and would not, attempt to force Moorfields to prescribe a drug when their clinical governance body has decided that the evidence does not support its use."
There we are. The PCT rebuts the idea that there may be any cost consideration and adds:
That does not reflect Lord Warner's view that the consultant could prescribe the drug and the PCT could fund it. The two positions are at odds.
We have moved on from November 2002 when my constituent's consultant first wanted the drug prescribed through to the middle of 2004 and we have got no further forward despite the consultant's determination to prescribe it. Professor Susan Lightman has set out her position in blunt language. For example in a letter to me of 3 December 2003, she said:
"The letter from the Chief Executive is completely inaccurate and does not reflect the situation at all."
She has been battling away for her patient as I hope that I am for my constituent.
Having reached this point, the next thing I did was to get back to Mr. Balmer, the person who had taken two months to reply to my letter and had done so only because I said that I might raise the matter in the House of Commons. After many phone calls, many attempts to find him and after ringing his secretary on a number of occasions, I finally got to speak to him on 23 July. He held to his position that it was not a matter of money, but of the "lack of any proof that the treatment works"that is the phrase he used; I wrote it down at the time.
I said to Mr. Balmer that if he had genuine concerns about using an unlicensed product, his consultant did not and, with respect to Mr. Balmer, the consultant was a medical person and not a manager. However, if Mr. Balmer did not want to use the product, I asked him about his plan B. Without a plan B, my patient will go blind. No plan B is there from Mr. Balmer. As he had said:
I asked him to make inquiries to find out whether there was any way that he would reconsider the decision of the Moorfields management to block its consultant from prescribing the drug. If that were not possible, I asked him to come back to tell me how he would help in another way to save the sight of my 31-year-old constituent. He promised to do so. Almost five months on, I am still waiting for a reply from Mr. Balmer, the chief executive of the trust. In case he has forgotten, I assure the House that we have telephoned him from my office on more than one occasion and asked him to ring me, but he has not done so.
Mr. Balmer has shown great discourtesy to my constituent, to a Member of Parliament, which is less important, and to the process whereby MPs represent their constituents. He has effectively written off my constituent and appears to be content to let him go
8 Dec 2004 : Column 1249
blindnot a very happy analysis of a chief executive of a trust designed to help people with sight difficulties. If nothing else comes out of the debate, I hope the Minister will have inquiries made about why Mr. Balmer seems to be incapable of answering an MP's letters or phone calls about a constituent who is going blind. It is not good enough. Mr. Balmer should examine his conscience.
As regards the way forward, we are told that cost is not the issue. The arrangement with the PCT has been a red herring. I believe the PCT would be willing to fund the treatment if Moorfields management withdrew its objections. The issue is whether it is appropriate for the drug to be used for the particular condition. My constituent's consultant, Professor Susan Lightman, is in no doubt. She has provided me, the PCT and no doubt her own management with examples in which the drug has been used. She sent me, for example, an extract from the department of ophthalmology and visual sciences at Queen's medical centre, Nottingham. It is entitled "Infliximab in the treatment of refractory posterior uveitis" and begins:
"Purpose: To determine the efficacy and safety of infliximab in the treatment of refractory posterior uveitis."
In order not to delay the House unduly, I shall read only the conclusions:
"Infliximab is effective in the treatment of sight-threatening refractory posterior uveitis. However, patients should be thoroughly screened for tuberculosis before treatment and followed up closely during and after therapy with infliximab."
Professor Lightman also sent me an extract with the same title, "Infliximab in the Treatment of Refractory Posterior Uveitis" from the American Academy of Ophthalmology, which reported the following results:
"Four of the 5 patients who were treated with infliximab responded to the therapy with resolution of uveitis within 6 weeks of the first dose and were able to discontinue all other immunosuppressive therapy. These 4 patients did not experience any adverse effects of infliximab."
It worked for four out of five patients.
A young man with a promising career is going blind. He has already lost one eye and, because of his condition, could lose his other eye at any time. His professional consultant believes there is a possible way forward for him through the prescription of infliximab. She has demonstrated that it has been tested elsewhere, and the results that she has found suggest that it can be effective without, in the cases referred to, side effects.
There may well be side effects. My constituent accepts that, but he is young, he is going blind and he wants to try the treatment. His consultant wants to prescribe it for him and, in my view, he should be allowed to undertake that trial. He should be allowed the chance to save his sight. If he cannot save his sight in that way, what is plan B? It is not sufficient for the chief executive to say that nothing more can be done for this patient. I do not want to condemn my constituent to blindness when a possible solution is there, waiting for him. I hope that in his reply the Minister will give him some hope.
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