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That the draft Retention of Communications Data (Further Extension of Initial Period) Order 2005, which was laid before this House on 3rd November, be approved.—[Kevin Brennan.]
24 Nov 2005 : Column 1722
Essential Drugs (Northern Ireland)
Motion made, and Question proposed, That this House do now adjourn.—[Kevin Brennan.]
3.20 pm
Mrs. Iris Robinson (Strangford) (DUP): I want to take this opportunity to highlight the importance of the availability of life-altering and, sometimes, life-saving drugs and to reiterate the fact that the Government must take the lead on the issue and not simply offload responsibility for it on to health boards in Northern Ireland.
The mailbag to my constituency office is dominated by health queries, and one of the most common problems is access to essential medications. I acknowledge the extra funding that the Minister has announced recently for high-cost medications, but I want to know how much of that is genuinely new money. Perhaps the Minister can detail that during his remarks.
Guidance from the National Institute for Health and Clinical Excellence does not extend to Northern Ireland. However, I understand that the Minister has given consideration to the matter, and perhaps he will take this opportunity to detail the latest position. In Northern Ireland, patients do not have the luxury of NICE guidelines to ensure that they receive critical treatments. The health boards can allocate their budgets as they please and can choose not to spend money on any of those essential drugs if they so desire. The Minister must give clear direction on access to those drugs.
Herceptin has gained significant press coverage in the Province during the past few weeks, particularly in relation to whether it can be used in the treatment of early breast cancer. An aggressive media campaign has been waged and concerned patients have threatened legal action. Those waiting for other drugs now fear that they may suffer as Herceptin is now provided to those who need it. Can the Minister guarantee that those with other cancer conditions will not suffer as a result of the funding for Herceptin?
In relation to multiple sclerosis, for example, a young woman who works in the health service has written to me. She has suffered pain and loss of feeling in her limbs and developed visual anomalies. She will not be able to obtain an MRI scan to confirm her diagnosis until the middle of next year. Only after that scan can her neurologist add her to the waiting list for beta interferon, and another long wait will commence.
That young woman is currently off work. She wants to work and realises that, if she remains off work and requires state benefits, her condition will end up costing society a great deal more than early treatment would have done. She feels that the provision that she is receiving is simply not good enough. Like many others who are in a similar position, she wonders what the point is of paying taxes and contributing for years to the public purse.
Unfortunately, the funding for MS drugs, such as beta interferon and glatiramer, have not improved and the waiting lists are increasing, both in terms of the number of people on the lists and the time that they are forced to wait. At the end of October 2005, 156 people
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were on the waiting list for disease-modifying therapies. The imbalance in numbers on the waiting lists from board to board raises fears of another postcode lottery for treatment if funds become available.
Mr. Peter Bone (Wellingborough) (Con): I am grateful to the hon. Lady for securing the debate. Is she aware that people face the same problems in not only Northern Ireland, but places such as Wellingborough?
Mrs. Robinson: I have absolutely no doubt about that. However, investigations by outsiders have indicated that we in Northern Ireland get 20 per cent. less for health care per head of population by comparison with the rest of the United Kingdom. The hon. Gentleman should also bear it in mind that some conditions are caused by stress and mental illness due to 35 years of ongoing terrorism. I hope that he can put the matter in perspective and appreciate that we have a greater need because of all the terrorist activity that we have come through.
Mr. Jeffrey M. Donaldson (Lagan Valley) (DUP): I commend my hon. Friend on securing the debate. Democratic Unionist Members admire her work to highlight in the local media the problem in Northern Ireland. Does she agree that many illnesses that require specialist treatment are stress-related? There is evidence to link the higher incidence of stress-related illnesses in Northern Ireland to the troubles, so we must think about the necessary funding to help people there, who are coming out of a traumatic situation. The Government must think about the problem in that context, rather than considering simply funding under the traditional methods used in the national health service.
Mrs. Robinson: I thank my hon. Friend for raising the matter. Having spoken to several psychiatrists in Northern Ireland, I totally concur with his views. One of the Cinderella-type structures in Northern Ireland is the mental health service. I intend to raise the question of mental health services and what is available in a future debate, because the situation is intolerable and unacceptable. Children have to go into adult units, although that is detrimental to them and certainly does not enable them to move on and progress as we would like them to.
Let me go back to what I was saying before I took interventions so that I can make my point. The imbalance in the number of people on waiting lists from board to board raises fears that there will be another postcode lottery for treatment if funds become available. That is because in 2004–05, one person in each board each month was given treatment. Surely that is a ludicrous means of distributing life-altering therapies in this day and age.
Even if NICE guidelines are eventually adopted in the Province, those whose treatment is currently being delayed might not fit the guidelines when funding becomes available due to the inevitable progression of their conditions. The psychological effect of being told that a treatment will help one's quality of life, but then learning that it is not available for funding reasons, is
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totally immeasurable in human terms. An increasing number of people are being recommended for treatment by their neurologist, but are informed in the next breath that it might be two years before they can commence treatment because there is no money to fund it.
To highlight the impact on individuals involved, I want to read from a letter that arrived in my office earlier this week. It was written by a lady from Killinchy, which is in my Strangford constituency. I will quote the letter in full, so please ignore all the nice things that she says and do not think that I am being conceited.
"I am writing to you to plead with you to please put forward a very strong case for the desperate need for Betaferon for MS patients in Northern Ireland. We desperately need more funding for Betaferon as it is the only specific drug available for patients suffering from this dreadful debilitating disease, in that it will help to slow down the progression of their symptoms. I was told yesterday, by Dr. Hawkins when I saw him for my appointment at the City Hospital, that I no longer have remitting relapsing MS, but have now got secondary progressive MS. Even though I have been suspecting this for quite a while myself, it still came as an awful shock when it was actually confirmed. Of course it causes all kinds of emotions to run through your mind. I was very tearful when first told—it was almost like being told your original diagnosis all over again. I was suddenly very frightened all over again, having got used to learning to live with it and learning to cope with the fact that everything is just starting to slow down—now having to fear that I am definitely just going to get progressively worse. I was a nurse, and so this probably sounds very naive, but it's incredible how much your mind can block out when you're in self-denial. When I was told that I met the criteria for Betaferon, it at least seemed like a light at the end of the tunnel—until—I was told that there was a long waiting list, and it would be quite some time before I would be able to get the drug that I so desperately needed now. The MS nurse that I saw was loathe to put a time scale on it".
Unless by some chance extra funding was released specifically for beta interferon, that would be the case and she might pass the date when the drug could help her.
"Please, please, please could you make an appeal to the government on behalf of all the people, whose lives would be made that bit more tolerable, if they could just be given the drugs that would ease their suffering and make their disease a bit more bearable and a bit more under control.
I know that you do a lot of work for the MS Society and I thank you for that, but I am still begging you to do that little bit more by putting forward our case to the Government."
How does the Minister respond to such a cry for help? That letter shows the strength of feeling and emotions experienced by patients awaiting disease modifying therapies.
Also within the past few days, another lady from Belfast wrote to me saying:
"I am 49 years of age, married with one daughter. I am writing to you as I have been informed by numerous people of the excellent work you have done in fighting on the side of multiple sclerosis sufferers. In April this year I was diagnosed with MS, which devastated both myself and my family, but I am determined to fight the disease in every way that I can. As I'm sure you know, the most effective treatment for MS is Interferon, which was prescribed by Dr Watt, the consultant neurologist in the Royal Victoria Hospital, but I was told that I would be placed on a waiting list as the Eastern Health Board had no funds to meet the cost of this treatment for approximately two years. I now purchase this drug privately, at a cost of £687.85 every four weeks, which is financially devastating to my family and I don't know how long I am going to be able to keep on funding this medication, which I have to tell you that I do feel the benefit of.
I have read with great interest the statement made by the Minister of Health . . . regarding the £14 million being made available for the purchase of drugs over the next two years. I feel that the case of Interferon for MS sufferers should be impressed on the"
Minister and the Eastern health and social services board, under whose jurisdiction this lady falls.
"Interferon is the treatment to give hope of quality of life to fellow MS sufferers like myself. I can't believe that I have been put through all this just so the health authority can balance the books. Human life cannot and should not be measured in pounds. Like many other sufferers I'm scared of what the future may hold."
Those are very moving and challenging remarks, as I am sure we would all agree.
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