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Trigeminal Neuralgia

Volume 514: debated on Tuesday 27 July 2010

Motion made, and Question proposed, That this House do now adjourn.—(James Duddridge.)

I am very pleased to have secured this debate, and I hope it might provide some comfort to many people across the UK who suffer from the condition of trigeminal neuralgia or TN. I should declare my interest: I have been a fellow sufferer. It is an interest I would gladly disown and, indeed, I fairly recently had neurosurgery to try to achieve just that—to disown it. I am grateful to the Minister for being in his place, and I am sure that he is as pleased as I would have been in his position to be closing the sitting for the Government before the recess.

If I may, I will outline some background to the condition, because part of the reason for securing this debate was to raise awareness of TN. Then I would like to express a little appreciation for those trying to deal with TN and help the sufferers. I will conclude with a few requests of the Minister, of which I have given him prior notice.

The Trigeminal Neuralgia Association UK—TNA UK—of which I am a member, is a support group for people suffering from an agonisingly painful neurological condition. Trigeminal neuralgia affects one or more of the three branches of the trigeminal nerve in the head and has been called “the worst pain known to man.” It is characterised by sudden, excruciating spasms of electric shock-like pain, usually just on one side of the face. Thankfully, it is a relatively rare condition thought to affect less than 0.1% of the population, although the latest TNA indications are that there are 12.6 sufferers per 100,000 people in the UK. It is more common in women than men, and although it usually affects people aged 50 or over, the association is coming across many younger sufferers, even young children.

I remember my first referral to a maxillofacial consultant at the Royal London hospital. He asked me to describe my symptoms. I told him and the medical students who were with him, “It makes me cry”. “There you are,” he told his team, “a classic definition of the condition. You either have a London bus parked on your foot or you have trigeminal neuralgia.”

Apparently there is nothing new about TN. It has been documented from the times of the Greeks and Romans in the 1st century, but because of its rarity research has been spasmodic and it is still a little-known condition often misdiagnosed due to lack of knowledge among some medical professionals.

The exact cause of the condition is unknown, but it is thought to be as a result of damage to the root of the nerve at the base of the skull where it emerges from the brain stem and often because the nerve is being compressed by a vein or artery. This damage causes the nerve to malfunction and send messages of intense pain to the brain in response to just a light touch on a “trigger” area of the face.

The pain can last from a few seconds to a few minutes, and there can be many bursts of pain in quick succession. Many patients suffer for months or years without correct treatment, and even undergo extensive, unnecessary dental work before the condition is correctly diagnosed. There can be periods of complete pain remission, but these gradually become shorter and shorter, and patients therefore live in constant fear of a severe attack of debilitating pain.

Any facial movement, such as eating, talking, smiling or kissing, shaving, washing the face or brushing one’s teeth can provoke an attack, and that can completely destroy any quality of life. There were several occasions in this place when I was preparing to speak and was fearful that I would be prevented from doing so because of the sense of an impending attack. That might have improved others’ quality of life in not having to listen to me, but for some patients being unable to live normally leads to their becoming isolated and depressed, sometimes to the point of suicide.

Normal painkillers do not bring any relief and initially anticonvulsants used to treat epilepsy are prescribed. However, these often have unpleasant side effects and lose their efficacy with time so ever larger doses are required. When the medication is no longer effective, or if the side effects cannot be tolerated, various surgical procedures can be considered, although these carry a risk of complication and results are not always long lasting. The data on the success of surgical procedures are only now being assessed and will be more accurately evaluated in the future. The most effective operation is a micro-vascular decompression or MVD—major surgery that involves moving the offending blood vessel or vessels away from the nerve, close to the brain stem. Unfortunately, TN has a habit of recurring, and even this operation does not always deliver long-term relief.

I should at this point express my sincere thanks to the excellent Mr Neil Kitchen and his first-class team at the national hospital for neurology and neurosurgery in Queen’s square, London. He operated on me last December, and I am happy to say that since then, when I was in considerable distress, my condition is much improved and my need for medication is now minimal. I should also say thank you to my wife, Dr Sheila Fitzpatrick, without whose care, love and attention a difficult experience would have been much more painful.

The Trigeminal Neuralgia Association was formed in 1999 by a patient and a doctor, Professor Joanna Zakrzewska. It specialises in treating TN, offers support and encouragement to sufferers, and became a registered charity in 2002. Professor Zak, as she is fondly known for obvious spelling and articulation reasons, is a beacon of hope to all TN sufferers. Worldly and wise, she is the essence of reassurance, and on her own or sometimes allied to Mr Kitchen and other surgeons, she offers sufferers real hope.

The aims of the association are to continue to provide information and offer support to members, and to raise awareness of TN among medical professionals and the general public. TNA UK receives no Government or corporate funding and is entirely dependent on membership fees and donations. All the association’s officers give their time for free, and TNA UK is now in contact with more than 1,000 patients, receiving many new inquiries each week. The officers of the association—the tireless chairman Jillie Abbott, supported primarily by Mr George Cunningham, a former hon. Member and treasurer of TNA UK, and membership officer Mr Clive Clifton—and numerous other generous individuals volunteer to spread the word, helping sufferers and raising awareness. They are all very much appreciated because of their efforts. The association can be reached by searching the web for TNA UK.

I mentioned earlier the misdiagnosis of TN as dental problems. I am pleased to report that the British Dental Association has acknowledged that its members can help in this regard. I am told that it plans to commission an article on facial pain for its British Dental Journal, and is considering a session on facial pain at next year’s BDA conference. We in TNA UK will be happy to do all we can to assist with that, and we are grateful to the BDA for looking at the issue so seriously. I have also written today to the BDA to seek confirmation of the initiatives.

I would be very grateful if the Minister advised the House on the following matters. In his briefing for this debate, have his officials acknowledged that there is an awareness issue? Notwithstanding the rarity of the condition, greater familiarity among medical and dental practitioners would save money and, more importantly, reduce suffering. TNA UK is not asking for funding, although that would be welcome—if the Minister has his cheque book, we would like to see it.

As I have said, the association volunteers work very hard. However, can the Minister advise whether there is anything that TNA UK can do to help additionally promote awareness of trigeminal neuralgia within the NHS family? Is there anything that the NHS can do specifically to support Professor Zak in her research into the condition and surgical outcomes? Finally, TNA UK and individual sufferers would welcome any advice that the Minister might have in respect of their condition and how their overall situation might be improved.

I am grateful for the opportunity to have this debate and I look forward to the Minister’s response.

I congratulate the hon. Member for Poplar and Limehouse (Jim Fitzpatrick) on securing the opportunity to debate this important issue on the last day before the summer recess. To have the privilege to be the Minister replying to a debate at this Dispatch Box is not something I necessarily expected when we all departed from this House in April, so it is a double pleasure to be concluding business in the House before we leave for a busy summer recess.

I congratulate the hon. Gentleman on highlighting this important topic, on bringing it to the attention of the House and on raising it with me as the Minister and, through me, with officials. He is right to raise both his personal experience and, in doing so, the experiences of many others who suffer from this condition and who often live with long-term chronic pain. He has spoken movingly and powerfully about the misery and discomfort that the condition can bring. I have heard that in some cases a strong wind just brushing a person’s cheek can be enough to trigger or ignite that intense pain through the nerve endings firing up. That is almost impossible to imagine unless one has personally experienced it, as he has described.

The hon. Gentleman asked about professional awareness. I have to confess that ministerial awareness of this condition was extremely low until quite recently. I had not heard about it—I will be honest—and I have spent the past few days learning as much as possible about it. From what I have learned, I agree that the condition deserves to be much better understood by policy makers, the general public and front-line clinical staff. The hon. Gentleman gave an excellent account of what clinical experts believe causes trigeminal neuralgia and of how the condition can be managed, and he rightly talked about how understanding of its prevalence is developing.

As the hon. Gentleman has explained, there are various treatments available. I understand that in about three-quarters of cases, patients respond well to anti-convulsant drugs, which have the effect of settling the nerve endings. However, although those drugs can be effective in reducing the frequency of attacks, they might not remove the pain entirely. Pain management techniques are then important for helping patients to manage their condition when attacks occur. As he has described, some patients might find that drug treatments become less effective over time or that they cause undesirable side effects. That is when surgery might become necessary to interrupt or block electrical activity in the nerve. There are several options, as he has described, but in the most severe cases, surgery is often the option taken up; it can be invasive and delicate, and it might not always bring the long-term relief that is desired.

Radiosurgery is another option, which may successfully interrupt the nerve impulses. There is exciting work under way using Gamma Knife technology, which is less invasive and can be more effective. The hon. Gentleman might be interested to know that the National Institute for Health and Clinical Excellence recently issued updated guidance on treating trigeminal neuralgia using Gamma Knife.

I have been told by my policy officials that one of the big challenges in treating this condition is diagnosis, which involves a GP or dentist having to rule out a whole host of other possibilities, including tumours, dental problems, the after-effects of shingles and dysfunction of the jaw. I can tell the hon. Gentleman that the Royal College of General Practitioners has developed a curriculum statement for neurological problems, which includes the need to consider trigeminal neuralgia in patients with headaches and neuropathies—I think that last word will read better in Hansard than I pronounced it—so it should be something that GPs cover as part of their initial training.

I add that the condition is also referenced in undergraduate dentistry training. Of course, because of its rarity, many GPs and dentists will see it only very infrequently in their practice, so I join the hon. Gentleman in welcoming the work that the British Dental Association is doing to promote the condition and to keep these possibilities in the front of dentists’ minds. By way of supporting these efforts, I have asked my officials to contact the dental deans to make sure that the condition also features in the continuing education and training of dentists.

The hon. Gentleman’s description of trigeminal neuralgia shows the need to join up national and local approaches to pain management and long-term conditions. As an action arising from this debate, I have asked my officials to look carefully at pain management in the context of the framework for long-term neurological conditions. I want to help the NHS to make the right connections between local services and to align national and local policies more closely to be helpful in that regard. We will have to make sure that all that feeds into commissioning and clinical practice at local level, and there are several areas in which we are looking to build knowledge and awareness at all levels of the NHS.

First, as the hon. Gentleman might be aware, NICE has recently issued new clinical guidelines on managing neuropathic pain. The guidelines specifically mention trigeminal neuralgia and describe the circumstances in which patients should be referred to a specialist pain service. On the back of that, NICE is working with the National Institute for Health Research to explore additional avenues of research that could help patients with the condition.

The NICE guidelines on neuropathic pain recommended four areas for future research, one of which is specific to trigeminal neuralgia and would give us evidence of the effectiveness of one of the most commonly used treatments. The other three topics cover the use of combination drug therapies, factors influencing quality of life, and the question of how much treatment should be influenced by the underlying cause of pain. They will be relevant to all forms of neuropathic pain, including trigeminal neuralgia. I can tell the hon. Gentleman that the topics are being considered for research as part the health technology assessment programme, and that a decision will be made in due course.

A second area of interest concerns the future planning of local services. The Government have agreed to press ahead with a national pain audit, to which 200 pain clinics are already signed up. Data collection will begin later this year. The audit will assess not only the organisation of local services to ensure that they meet local needs, but quality of care through the measurement of patient outcomes. The audit will help us to build a picture of patient need, which will help the NHS to build local strategies to improve pain management services. Again, such information will enable us to ensure that the right services are available for people with trigeminal neuralgia.

Thirdly, as the hon. Gentleman might also be aware, a consultation will take place during the summer on the NHS transparency in outcomes framework set out in the recent NHS White Paper. We want to hear the views of health care professionals, patients, carers, hon. Members and the public on what measures we should seek with regard to best outcomes and ensuring that patients have the right experiences in the NHS. I would certainly like TNA UK to contribute its thoughts on that, because that would help the shaping of the kind of outcome agenda that we want to see.

Fourthly, I will meet the Neurological Alliance, an umbrella group representing more than 50 neurological charities and organisations, to discuss the way forward on long-term conditions more generally. I understand that TNA UK is part of this group, so I hope that it will make its views known in the alliance so that they can form part of our discussions.

I join the hon. Gentleman in thanking third sector organisations such as TNA UK, which he rightly praised, for their work in raising patient awareness. On average, someone with chronic pain will have direct contact with a health professional for only about three hours a year; they care for themselves for the rest of the time. It is therefore extremely important for patients to know about their condition and receive the support that they need to manage their pain. That will become ever more important as we broaden control through personal health budgets and offer patients greater choice and say over their treatment. Good information for patients is the key to unlocking those benefits. I should add that there is also useful information on the NHS Choices website, which discusses the diagnosis and treatment of the condition and puts patients directly in touch with TNA UK.

The hon. Gentleman asked what else TNA UK could do to raise awareness of the condition or to improve the position of sufferers. I have already described a number of initiatives on which we would warmly welcome input from TNA UK. If I may make a final suggestion, the Chronic Pain Policy Coalition is doing excellent work nationally and regionally to inform and shape policy. TNA UK has common cause with such groups, so they could helpfully join forces to make the case for better pain management throughout the country.

I congratulate the hon. Gentleman on securing the debate, and I am now aware of the pain and agony that the condition can bring. Although I am afraid that the Department of Health is not resourced to give equal attention to every individual condition, it is gratifying to know that organisations such as TNA UK are supporting patients and promoting greater awareness. I am keen for us to work with them, and with the hon. Gentleman, to continue improving the quality and effectiveness of treatment for those who suffer pain, and I believe that the White Paper provides useful impetus in that regard.

On a personal note, I wish the hon. Gentleman the very best. I am delighted to hear that his treatment was to his satisfaction, and I hope that it provides him with lasting relief from this distressing condition.

Question put and agreed to.

House adjourned.