Lyme Disease

Lord Luce Excerpts

Thursday 22nd October 2015 Grand Committee

[Lord Luce (CB)]

My Lords, we should thank the noble Lord, Lord Greaves, for raising this issue. I think I am right in saying that this is the first time that it has been raised in Parliament. That would not be surprising because compared to other diseases it is relatively new, and so little is known about it still. The noble Lord, Lord Greaves, has highlighted the scale of the problem. My interest is not that of an expert. I must underline that point straight from the beginning. I am looking forward to hearing what the experts here have to say and, indeed, what the Minister has to say about this.

I speak as someone who knows a number of people who have Lyme disease, and I know how unpleasant it is. It is clearly very complex, as the noble Lord, Lord Greaves, has highlighted. It has spread to many parts of the United Kingdom. It is the largest tick-borne disease in the United Kingdom and it is also a serious problem elsewhere, including the United States and parts of the continent. It is a relatively new experience for us in this country.

To me, the key point made by the noble Lord, Lord Greaves, is the lack of knowledge on the parts of both the public and most of the medical profession. Indeed, it has been suggested that as far as the public are concerned, one in three people does not realise that they have a tick on them, or have had a tick. They would not know that they had this particular disease, or what caused the symptoms. We are told that earlier diagnosis and treatment is very important. If this can be achieved, the disease may still not be 100% safe but at least it is better than the second stage.

There are two areas where I would like to add to the points made by the noble Lord and ask the Minister to comment. The first is the position of the medical profession. As someone who campaigns on the issue of chronic pain, I have every sympathy with GPs, who very often are overwhelmed by pressure and demands. Here we are with another issue which we are asking them to pay attention to. Some of them probably never see, or have not yet seen, cases of Lyme disease themselves, so it is not surprising that many of them do not know much about it and may misdiagnose. I very much want to support Lyme Disease Action. The question of a regional service with specialist GPs was raised by the noble Lord, Lord Greaves. A regional service with specialist nurses and disease consultants could provide services and support for GPs in that region. Would that help the GPs to do their job more effectively? I would be interested to hear what the Minister has to say.

My second point has also been touched upon. How do we help those who are not diagnosed early enough, or who for the reasons we have already discussed have fallen through the net and received no treatment whatever? We do not know how many are in this category, and I hope that more information will be made available in due course. We have already heard about the kind of symptoms that people face when they have had this disease for some time: flu-like symptoms, persistent fatigue, pain, and impaired memory. People can be affected for a large part of their life, or for many years. Indeed, they may lose their job—it is that serious. It seems to me that the great uncertainty is what is the most effective diagnosis and treatment for those who are suffering from this in the longer term. We ought to acknowledge the work of the Public Health England Porton Down laboratories, which provide specialist expertise in Ebola and Lyme disease. We should not underestimate what they do for us.

There seems to be a considerable dispute as to whether chronic and persistent Lyme disease actually exists at all. I know that some doctors can be dismissive of the idea and dismiss people with the symptoms we have been talking about. They quite often lash around spending money on researching what to do about the symptoms, perhaps without realising that it is Lyme disease, thus incurring quite a lot of expenditure for the National Health Service. I look forward to hearing from the Minister on that issue as well. Could we fund extensive research in order to find out more about it?

Health: Neuromuscular Services

Lord Luce Excerpts

Wednesday 30th March 2011 Grand Committee

[Lord Luce]

My Lords, there is nothing more powerful than the voice of a patient who has had long experience of a particular condition. Therefore, we should be very grateful to the noble Baroness, Lady Thomas, for introducing the topic of this important debate—which, as she said, affects at least 60,000 people with muscular dystrophy—and for the expression of her desire for a national neuromuscular plan, which I am sure would be beneficial.

I should like to limit my remarks to the one aspect that I know something about—chronic pain—and how pain management services can help the many who suffer from neuromuscular problems. I am grateful to the noble Baroness for encouraging me to speak on that aspect.

I have experienced chronic pain for nearly 40 years. Much more important is that, as we know, 8 million people in this country suffer from chronic pain, take up 4.5 million appointments with doctors and cost the National Health Service about £70 million. I was interested to read a report written by Dr Jensen two or three years ago along with some of his medical colleagues. It was the product of examining the effect of pain on neuromuscular disorder, which affects a number of people, particularly those with special types of muscular dystrophy.

Dr Jenson concluded that there is no effective or consistent treatment of pain for those people. There is no easy access or tailor-made service for people who suffer from pain, and there should be. That fits very strongly with the recommendations of the previous Chief Medical Officer, Sir Liam Donaldson, who recommended that there should be rapid and easy access to pain clinics so that early assessment can be given. What interested me in the report was that those suffering from neuromuscular disorder mentioned no fewer than 25 current different kinds of pain treatment. I should like to spend a minute or two examining some common factors between neuromuscular services and pain management services.

The first thing that strikes me is that both need multidisciplinary care. For example, we all need GP advice on medical aspects. Many people need psychotherapy because, for example, stress exacerbates pain. We need physiotherapy. We need hydrotherapy. I am particularly pleased to support the words of the noble Baroness, Lady Thomas, in suggesting that there should be more intensive research into the value of hydrotherapy. I accept that these pools must be very expensive to run. I have seen several of them and used a number myself. One run by the West Sussex Primary Care Trust in Bognor had integrated musculoskeletal, rheumatology and pain management services. I have seen how important hydrotherapy is to the treatment of all these people.

However, I am sad to have learnt this week that a hospital in Leicester has lost its hydrotherapy pool. I assume that that is because of cost pressures. As part of the overall research that I hope will be done, it is important to find out how hydropools can be shared among several specialist services in order to make best use of very limited resources. I know that that may be difficult but, if we want to keep them going and introduce new ones, it may be important.

I am also interested in how multidisciplinary services can be shared in other areas. For the sake of argument, I do not know the extent to which physiotherapists, in whose field there is so much specialism now, cannot handle the combination of pain management for muscular dystrophy pain and osteoporosis. However, it is important to look at where these multidisciplinary services can be shared. As a layman, I would say that there is too much compartmentalisation in the health service, even now.

Then there is the question of local lotteries, with varying standards of services. The National Pain Audit, which is now taking place, is looking at best practice in various parts of the country. That is the best way of trying to establish a national minimum standard throughout the country. I hope that the same will happen for neuromuscular services and that best practice can be examined.

That leads me naturally to the National Institute for Health and Clinical Excellence because NICE issued guidelines on the early management of persistent low back pain, which I strongly welcome. However, it needs guidelines, as the noble Baroness and other noble Lords have said, for quality care in neuromuscular conditions across the country. I hope that NICE will introduce those.

We should be aware also of the importance of preventive early intervention in the both the areas that we are talking about. The noble Baroness and other speakers referred to hospital admissions for muscular dystrophy which could have been avoided. The same applies to pain in people who, for example, are trying to hold down jobs. Preventive work can do a lot to keep people in their jobs or to enable them to return to their jobs early. Dame Carol Black’s report of 2007 on the health of Britain’s working-age population contains a lot of important recommendations.

We shall be debating GP commissioning consortia a great deal. We must be aware that doctors will have to grapple with many priorities in the commissioning and delivery of a large number of specialised services. They will need to be equipped with information and training as to what action is needed to best help patients with specialised problems and the multidisciplinary assistance available. That will be of the highest possible priority when we come to debate the Bill.

What matters at the end of the day is finding ways, with the help of the medical tools available to us, to enable those who suffer to manage their own problems as best they can to give them hope and help them to improve the quality of their life.

NHS: Pain Management Services

Lord Luce Excerpts

Wednesday 7th July 2010 Lords Chamber

Tabled by

[Lord Luce]

To ask Her Majesty’s Government what action they will take to provide access to multi-disciplinary pain management services in the National Health Service for those experiencing chronic pain.

[Lord Luce]

My Lords, I am most grateful to the Minister for replying to this debate and to all noble Lords who are taking part in it. Why do I raise the subject? For over 40 years, I have suffered from chronic back pain due to musculoskeletal problems, but I am fortunate in that I have managed to live a full life with various public responsibilities due almost entirely to prompt, effective and dedicated support from specialists in the private sector. Very few people have access to it. Some 7.8 million people in this country suffer from chronic, as opposed to acute, pain, and my plea today is that the Government ensure that every single one of them has access through the National Health Service to multidisciplinary rehabilitation to help them to stay in their jobs and to live a life of at least tolerable quality. Given this support, I believe we can learn to manage our own pain.

The facts are horrific. One in seven individuals suffers from chronic pain, of which musculoskeletal pain or osteoarthritis is the commonest cause, although it includes cancer pain. It can be deeply damaging to the quality of life, causing sleeplessness and depression while interfering with normal physical and social life. Milton wrote,

“… pain is perfet miserie, the worst

Of evils, and excessive, overturns

All patience”.

Moreover, it has an adverse effect on the economy of the country as well as on the individual. Chronic pain takes up the equivalent of 4.6 million GP appointments, costing approximately £70 million per annum. In 2000, it was calculated that the total cost of back pain was just over £12 billion, and today 119 million working days are lost per annum because of back pain. A recent pain survey in Europe showed that 25 per cent of people in chronic pain had lost their jobs and that a considerable proportion of them never return to work. In the present economic climate, it is worth stressing that an effective preventive service could save overall costs in the long term.

A turning point came with the report on pain by the previous Chief Medical Officer, Sir Liam Donaldson, in 2008. He stressed that pain affects all age groups, not just the elderly. Worryingly, a quarter of school-age children have reported pain and 8 per cent suffer from chronic pain. Sixty-eight per cent of pain clinics in the UK do not see children, according to the British Pain Society. The most affected are those at work in their 40s and 50s. Sir Liam highlights the fact that only 14 per cent of those suffering from chronic pain have seen a pain specialist, normally an anaesthetist, and that the infrastructure is inadequate, unco-ordinated and unevenly resourced, which results in a variable quality of service provision—in other words, a postcode lottery. Generally, interest from primary care trusts and strategic health authorities in establishing better pain services seems to be low.

The report’s conclusion is clear; pain needs to be recognised as a disease in its own right, and a pain score should become one of five vital signs to be monitored routinely in hospitals and elsewhere. Above all, it advocates that a multidisciplinary approach should be vital in the prevention, assessment and management of pain and that there should be a national network of rapid-access pain clinics providing early assessment and treatment, as early intervention is critical for improving the long-term outcome. The report adds that all health professionals dealing with patients should be trained in chronic pain and that the assessment of pain should be included in the quality and outcomes framework in primary care. Other recommendations include the creation of a model pain service of pathways of care and the maintenance of a proper database.

I am delighted to say that, to help us in all this, is the Chronic Pain Policy Coalition, under the chairmanship of Dr Beverly Collett, who runs a successful pain management unit in Leicester. It also supports an all-party parliamentary group—Anne Begg MP was re-elected today as its chairman—that has a growing membership, in this new Parliament, of more than 20 parliamentarians. We are now most anxious to see the recommendations of the former Chief Medical Officer implemented.

For my part, I have witnessed some successful multidisciplinary operations in the NHS. In my own county, I have visited the West Sussex Primary Care Trust and seen its chronic pain management services in Bognor, where it aims to achieve integrated musculoskeletal, rheumatology and pain management services. Key to this is its provision of tools for patient self-management with the help of hydrotherapy, muscle-pain clinics, physiotherapy, fit-for-work schemes and clinical psychology. I was particularly impressed by my visit to the Pain Management Centre, which is led by Dr Baranowski at the National Hospital for Neurology and Neurosurgery in London. It has had success in treating patients on a multidisciplinary basis.

Another centre of excellence is the Pain Management and Neuromodulation Centre at Guy’s and St Thomas's in London under the leadership of Dr al-Kaisy, whose excellent residential unit gives prospects of a better life for many patients who had been in despair from their suffering. I have also seen the support given to cancer patients suffering longer-term pain at the Palliative Medicine and Pain Unit of the Royal Marsden Hospital, which is led by Dr Williams. The unit has a multidisciplinary strategy that gives options ranging from medication, physiotherapy and psychology to interventional support. It is good that pioneering work, principally on the spinal cord and the brain, is being carried out, mainly in some university research departments. I hope that it may eventually lead to improved methods of treatment.

There is therefore clear evidence to show that, with the right expert support, people can be encouraged to manage their own pain, improve the quality of their lives, and in many cases stay in employment or, indeed, return to work. The provision of access to multidisciplinary pain clinics would in itself be a good investment for the country. This is best highlighted by Dame Carol Black's 2007 review of the health of Britain's working-age population. She stressed the business case for employers' investment in employees’ health. Much can be done through preventive and remedial measures with more flexible working patterns and wider provision of support and therapeutic sessions. A key recommendation was to change the nature of the GP’s sick note so that the GP focuses on what can be done to encourage the patient to go back to work rather than stay at home.

I should highlight the fact that Scotland has set something of a lead in managing chronic pain. In 2007, the Scottish Health Minister recognised pain as a long-term condition in its own right, and he has appointed a pain tsar to co-ordinate all pain service development. Last summer, I was briefed by the pain management service in the Shetlands, which caters for a population of 20,000. The Welsh Assembly Government have recognised pain management as one of five areas for improvement by providing services nearer to people's homes.

I am glad to note that the National Institute for Health and Clinical Excellence has issued guidelines on the early management of persistent low-back pain. I understand that the new National Quality Board is considering where chronic pain fits into the level of clinical priorities for quality improvement in healthcare.

I hope that the Minister will be prepared to meet me and some interested parliamentary colleagues before long to discuss the way ahead. The previous Government can take credit for laying the foundations, and I look to this new coalition Government to make a determined effort to establish multidisciplinary rehabilitation pain management services that are accessible to all those suffering from chronic pain in England. My experience tells me that if they do that, they will give hope to many people of all ages in this country.