Rheumatoid Arthritis

– in the House of Commons at 6:02 pm on 17th July 2003.

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Motion made, and Question proposed, That this House do now adjourn.—[Charlotte Atkins.]

Photo of Sir David Amess Sir David Amess Conservative, Southend West 6:04 pm, 17th July 2003

I am very grateful to Mr. Speaker for giving me the opportunity to raise the important question of the treatment and care of people who suffer from rheumatoid arthritis. The Under-Secretary of State for Health, Dr. Ladyman, is fairly new to his post and I certainly do not expect him to be an expert on this subject. This debate is not an opportunity for me and my colleagues to attack the Government's health policy. Given that all Governments must have priorities, I ask him to find out whether he can nudge rheumatoid arthritis up the list because it is a dreadful disease from which many people suffer.

Rheumatoid arthritis is a common auto-immune disease that is painful, disabling and progressive. It affects people of all ages including young children and teenagers—I do not think that that is widely understood. It has a mortality rate similar to that of coronary heart disease, diabetes, Hodgkin's disease and stroke, yet unfortunately, by comparison, its treatment is comparatively poorly resourced. The lack of appropriate funding and resources leads to a lack of adequate disease management, which in turn impacts adversely on patients' quality of life. The loss of earnings suffered when people have to stop work because of rheumatoid arthritis has a detrimental financial impact on patients, their families and the wider community.

Some 42 per cent. of rheumatoid arthritis patients are registered disabled within three years while 80 per cent. become moderately to severely disabled within 20 years of their diagnosis. There were 1.9 million consultations with general practitioners for inflammatory arthritis in 2000, and in 1999–2000, 9.4 million working days were lost in the United Kingdom because of rheumatoid arthritis, which represents £833 million of lost production.

I pay tribute to Mrs. Ailsa Bosworth, who is the president and founder of the National Rheumatoid Arthritis Society—NRAS. There is no doubt that without her determination, rheumatoid arthritis would not have achieved such prominence among the general public. I hope that the Government will respond to that accordingly.

My fellow officers of the all-party group on rheumatoid arthritis and I had the opportunity to visit Guy's hospital and meet Dr. Kirkham and Professor Panayi, who have given great service to people who suffer from rheumatoid arthritis. We saw the hospital's excellent facilities from which rheumatoid arthritis sufferers could benefit. We also had the opportunity to visit Queen Mary's hospital in Sidcup, where we met Dr. Banerjee. He is a wonderful doctor who has given great care to his patients, but unfortunately for them, the hospital's facilities are in no way comparable to those at Guy's.

The newly formed all-party group on rheumatoid arthritis, of which I am chairman, has worked closely with the NRAS since last October, with the specific aim of bringing the needs of rheumatoid arthritis patients and the resources required for rheumatology, as a specialist health area, to the Government's attention. Addressing the issues that relate directly to rheumatoid arthritis would benefit the wider patient community who suffer from osteoarthritis and other forms of arthritis, as well as people with musculo-skeletal conditions who are also treated by consultant rheumatologists and multidisciplinary teams that operate in the rheumatology field. I am pleased to say that a summary of the issues will be the subject of a NRAS consensus report that will be published at the end of the month. It will include contributions from patients, leading rheumatologists, primary care physicians and specialist rheumatology nurses from the Royal College of Nursing rheumatology nursing forum.

I ask the Government to do whatever they can to give access to quality treatment. Early diagnosis and treatment is essential to minimise disease progression, joint damage and pain. The NRAS patient survey that was conducted earlier this year showed that it is unfortunately not uncommon for a patient to wait longer than a year to be referred into secondary care to see a specialist—of course, that is not acceptable. Early referral to a multidisciplinary team involving specialist nurses, physiotherapists, occupational therapists and podiatrists is recommended for best care. There are simply not enough of those teams. The recommended provision for consultant rheumatologists is one per 85,000 people. Sadly, that is not met anywhere in the United Kingdom. The latest figures suggest that the speciality is more than 40 per cent. under strength, with an average of one consultant rheumatologist for every 150,000 people.

I am also concerned about professional training and standards of care generally. Training in musculo-skeletal disease does not have sufficient priority in primary and secondary care. Current training is inadequate. There are also barriers to adequate rheumatoid arthritis services. The NHS has not paid enough attention to that over the decades. That is not in any sense a jibe at the Government. No Government have given it sufficient priority. The distortion of care in national priorities has to be addressed. It is no longer acceptable that guidelines have been produced for optimal care in Scotland and that a strategy for arthritis in Wales is being developed by the Welsh Assembly, but nothing has been developed in England. No doubt the Minister will tell me that that is on the agenda.

There is no national service framework for rheumatoid arthritis, other forms of arthritis and musculo-skeletal conditions. There is only a brief mention of the disease in the new GP contract. There is no drive that I am aware of—again, the Minister may tell me otherwise—to improve the quality of services in general. Too few primary care organisations or health authorities have the background to commission relevant services.

In March 2002, the National Institute for Clinical Excellence approved use of anti-TNF therapy for people with severe rheumatoid arthritis on whom existing treatments had failed. Since the debate was publicised, any number of organisations and interested parties have advised me on what I should raise, but I cannot cover all the issues in 15 minutes. More than 12 months on from NICE approving its use, the key finding is that postcode prescribing of anti-TNF therapy remains a significant problem in the UK.

More than a third of the rheumatologists in the survey reported that they are still unable to prescribe anti-TNF therapy to every patient they identify in accordance with NICE guidance. In at least one area, the local primary care trust has decided not to commission any anti-TNF therapy on the ground of a major shortfall in cash. In the majority of cases in which rheumatologists could not prescribe anti-TNF therapy to all the patients they identified, insufficient funding was reported as the main barrier. That is obviously worrying. The survey took place between February and May 2003. Of 184 UK consultant rheumatologists surveyed, 152 participated, which is a pretty good response, representing 82.6 per cent. of respondents, the majority of whom were from England and Wales.

I have three questions for the Minister. If he does not have time to reply, perhaps he could write to me. Does he agree that the loss of quality of life to rheumatoid arthritis patients, the burden of care put on families, which leads to a high level of separation and divorce, the loss of £833 million-worth of production to employers, the loss of revenue to the Government and the cost of benefits paid to disabled rheumatoid arthritis patients, is a serious issue and must be addressed?

The main point is that I would like to know from the Government what importance and what priority they attach to treating inflammatory arthritis.

The second point is whether the Minister agrees that general practitioners, primary care trusts and special health authorities will put their resources foremost into meeting Government targets and priorities, and that unless rheumatoid arthritis and arthritis generally are made higher priorities by the Government, rheumatoid arthritis patients will miss out.

Finally, will the Minister welcome the work that is being done by patient groups and health professionals under the standards of care project that is currently under way, which is being co-ordinated and sponsored by the Arthritis and Musculo-skeletal Alliance? Perhaps the Minister might agree to an all-party meeting where we might have more time to go into greater depth on this important issue.

Photo of Mr Andy King Mr Andy King Labour, Rugby and Kenilworth 6:16 pm, 17th July 2003

I shall be extremely brief. First, I congratulate Mr. Amess on achieving such a quick success in securing this debate. The all-party group feels strongly about the devastating impact that rheumatoid arthritis has on the individuals concerned and their families, young and old alike.

At the heart of the debate, what surely is at issue is the way in which the National Institute for Clinical Excellence guidelines are being interpreted and implemented by primary care trusts. I heard that one PCT had decided not to allow TNF therapy; my heart sank. I quickly checked to make sure that it was not the PCT in my area. I was greatly relieved to speak to Dr. Patricia Youett, of Rugby PCT, who informed me that it adheres extremely carefully to the guidelines that NICE has issued. It believes that that is the only way forward in ensuring fairness and equity to all patients wishing to receive health services.

It is wrong that arthritis does not feature in the priorities of certain PCTs. That must be put right. It is timely for the Minister to take action to ensure that clear direction is given to PCTs throughout the country to ensure that they give due consideration to the guidelines issued by NICE and, more importantly, act upon them. We must put postcode prescribing into the dustbin of history once and for all.

Photo of Bob Spink Bob Spink Conservative, Castle Point 6:18 pm, 17th July 2003

We heard from my hon. Friend Mr. Amess about the seriousness of rheumatoid arthritis. He spoke with passion and power about an important subject that needs its profile raising.

I pay tribute to rheumatologists throughout the country, and particularly at Guy's, which has a centre of excellence. I know that all rheumatologists are pretty good guys, but some of them do not have the facilities that are available at Guy's. We would like to see those facilities made available nationwide so that everyone can benefit from them. I speak as vice-chairman of the all-party group.

The serious problem that is the focus of the debate is postcode prescribing for rheumatoid arthritis. It was covered by the "You and Yours" programme on Radio 4 on 14 July. It highlighted that two thirds of severe sufferers do not get the treatment that the National Institute for Clinical Excellence guidelines say should be made available to them. That means that 18,000 to 30,000 people with a severely crippling disease that can lead to high levels of mortality are being denied the treatment that they so desperately need. I ask the Minister, who I know is a good man and is listening carefully, to raise the profile of this disease. It does not have the appeal of strokes, heart attacks and cancer, but it is important. Secondly, will the Minister ensure that everyone who would benefit from anti-TNF treatments, which NICE says it should be mandatory to provide, can take advantage of them?

Photo of Stephen Ladyman Stephen Ladyman Parliamentary Under-Secretary, Department of Health 6:20 pm, 17th July 2003

I congratulate Mr. Amess on winning this Adjournment debate and on taking up the chairmanship of the all-party group on rheumatoid arthritis. I very much welcome the creation of that group, and look forward to an early opportunity to meet its members. I also congratulate my hon. Friend Andy King and Bob Spink on being prepared to stay here today and participate in this debate. If their constituents are not familiar with the workings of the House, they may not realise that many of our colleagues started their summer holiday yesterday, and that we have given up a day of our recess to take part in this important debate.

This debate gives me an opportunity to state the Government's position on both rheumatoid arthritis and the work and guidance of the National Institute for Clinical Excellence. I emphasise that when NICE has issued guidance, we expect that guidance to be implemented everywhere. It is not optional—it is compulsory. We will be doing what is necessary to ensure that it is implemented everywhere. We established NICE for specific reasons, and we intend to make sure that its judgments are followed.

I appreciate the efforts of the various voluntary agencies, including the excellent NRAS, which the hon. Member for Southend, West mentioned, many other voluntary organisations and the umbrella organisation, the Arthritis and Musculo-skeletal Alliance or ARMA. I welcome recent work highlighting disparities in treatment. I have seen the survey on the implementation of NICE guidance and the use of anti-TNF therapies. Frankly, it is disappointing that a number of primary care trusts still not have made those important drugs fully available, and we shall certainly follow that up.

Members in the Chamber, but perhaps not other people who do not follow this issue closely, will know that tumour necrosis factor alpha has been found to be a key molecule in the cause of rheumatoid arthritis. Over-production of that molecule is one of the causes of the inflammatory processes that damage cartilage and bone. Anti-TNF therapies and other drugs inhibit that process. Arthritis can and does, as the hon. Member for Southend, West said, affect people of all ages, from young children to older people, but prevalence generally increases with age. It is estimated that about 70 per cent. of 70-year-olds suffer from some form of arthritis, mostly osteoarthritis. Arthritis means "inflammation of the joints", and it is the chief cause of physical disability in the United Kingdom. It encompasses more than 200 diseases affecting joints, the surrounding tissues and other connective tissues. Those diseases and conditions include osteoarthritis, rheumatoid arthritis, juvenile rheumatoid arthritis and fibromyalgia.

We are aware that arthritis has a significant impact on health and community services. It affects the people who experience its painful symptoms and disability, their family members and care givers. It is extremely painful and involves serious loss of mobility in many cases. The severity and extent of the condition varies from individual to individual, but we are well aware of the costs to communities and society generally, which hon. Members have pointed out.

NICE was set up as a special health authority for England and Wales on 1 April 1999. It is part of the national health service, and its role is to provide guidance on best practice. That guidance covers individual health technologies, including medicines, medical devices, diagnostic techniques, procedures and clinical management. NICE was asked to appraise the use of infliximab, also known as Remicade, and etanercept, also known as Enbrel, in the treatment of rheumatoid arthritis.

NICE issued its guidance in March 2002. It recommended the use of etanercept for the treatment of juvenile idiopathic arthritis—JIA—and etanercept and infliximab for adult rheumatoid arthritis. Consultant rheumatologists, or consultant paediatric rheumatologists in the case of JIA, should prescribe these drugs, in accordance with the guidelines set out by the British Society for Rheumatology or the British Paediatric Rheumatology Group.

Two registries have been set up by the BSR and the BPRG to monitor the dosage, effects and any side effects of these drugs. The NICE guidance recommends that doctors should send information to the appropriate registry regularly to help researchers to find out about the long-term effectiveness and side effects of treatment with both drugs.

The NHS is receiving the largest sustained increase in funding in its history. We expect that increase in funding to be used to implement NICE guidance. Given that increase in funding, there is no excuse for primary care trusts not to follow the guidance. There is a statutory obligation on PCTs to make the treatments that NICE recommends available to patients.

In December 2001, the Government announced that they would meet their commitment to ensuring that patients receive drugs and treatments recommended by NICE if that was deemed appropriate by their clinicians. Directions were issued obliging primary care trusts to provide appropriate funding for recommended treatments. There should not be any administrative or financial blocks preventing that. From 1 January 2002, the NHS has three months from the date of publication of each technology appraisal guidance to provide funding, so that clinical decisions made by doctors involving NICE-recommended treatments or drugs can be funded.

When treating patients, clinicians have to make an independent clinical judgement that takes due account of NICE's advice and the strength of evidence that lies behind it. They may depart from the advice if, in their view, the circumstances of the individual patient justify doing so. But they will be held accountable through clinical governance arrangements for their clinical decisions. To assist them in this task, all technology appraisal guidance for treatments and drugs initiated after October 2000 includes specific audit advice and measurable criteria to be used in local reviews. A similar approach is being adopted for clinical guidelines.

The Commission for Healthcare Audit and InspectionCHAI—will be the main inspector of NHS services in future. It will carry out inspection against clear national standards to be specified by the Secretary of State, and we expect NICE guidance to be included in those standards. It is worth reminding the House that NICE is proving to be effective, and at a national level there is evidence of increased prescribing of NICE-approved drugs. Indeed, the ARMA evidence appears to support that, as almost two thirds of the rheumatologists surveyed reported no problems. The comments of my hon. Friend the Member for Rugby and Kenilworth indicate that, in his area, NICE recommendations are being followed.

Under the previous Government, postcode prescribing of expensive drugs like anti-TNF therapy for arthritis was widespread. Postcode prescribing is now rare and we need to make it even rarer. The manufacturers of the arthritis drugs that we are discussing estimate that around 9,000 patients already benefit from this therapy.

Although we do not get involved in the day-to-day management of the NHS at local level, we will respond if we become aware of a specific instance where NICE guidance is not being implemented in the prescribing of infliximab. We have had reports from Nottingham, for example and we are investigating the concerns that have been raised. Responsibility for commissioning decisions across Nottingham lies with Nottingham commissioning forum, which co-ordinates decisions between PCTs and is advised by the major NHS trusts in the area. The forum has discussed implementation of NICE guidance, including the use of anti-TNF drugs in the treatment of rheumatoid arthritis on a number of occasions. The local strategic health authority and PCTs have undertaken to find out why problems have arisen.

The ARMA report mentioned that, in some areas, a lack of nursing support was a barrier to patients' receiving anti-TNF therapy. There is an ongoing comprehensive programme of national and local action to recruit and retain nurses, midwives and health visitors. The commitment to 20,000 extra nurses in the NHS by 2004 contained in the NHS plan was met ahead of target in 2001. There were almost 50,000 more qualified nurses working in the NHS in England in April 2003 than in September 1997. The latest forecast is that 80,000 more nurses, midwives and health visitors will be working in the national health service as a whole by 2008, which highlights the importance of continuing efforts both to recruit and retain staff. That should help to overcome the nursing problems identified by ARMA in its report.

Research will also be very important, but it is worth saying that the research effort is not confined to the United Kingdom Government. We sometimes receive requests for increases in research that seem to imply that that is the case or to forget that other countries are involved in research efforts. Furthermore, research is not always done by the Government; it is also done by voluntary organisations, charities and so on. The Arthritis Research Campaign, for example, aims to advance the understanding, prevention and treatment of arthritis and related conditions. It is the fourth largest medical research charity in the United Kingdom, with an annual income of £26 million. I should perhaps admit at this point that it employed me for six years.

The main agency through which the Government support medical and clinical research is the Medical Research Council, which also employed me for six years. The MRC is an independent body that receives its grant in aid from the Office of Science and Technology. The Department of Health funds research to support policy and the delivery of effective practice in the NHS. The MRC spent approximately £4.2 million on arthritis research in 2001–02. That figure includes work on the causes and treatment of arthritis, osteoarthritis, rheumatoid arthritis and inflammation. It also includes work on musculoskeletal function, such as ankylosing spondylitis, on connective tissue disorders, such as Sjogrens syndrome and lupus, and on pain. Work being carried out at the MRC National Institute for Medical Research may contribute to the development of new drugs to treat rheumatoid arthritis and other inflammatory diseases.

The Department of Health has funded several research projects on rheumatoid arthritis via its national health service research and development programmes. They include a randomised controlled trial of different knee prostheses at the university of Dundee that is due for completion in 2010 and "Are topical or oral Ibuprofen equally effective for the treatment of chronic knee pain in older people?", a study that is due to end in December 2005. The Department also provides NHS support funding for research commissioned by the research councils and charities that takes place in the NHS. Details of Department of Health-funded research and other projects that are completed and under way in the NHS can be found on the national research register.

Priorities for health and social care are set out in "Improvement, Expansion and Reform", the priorities and planning framework for 2003 to 2006. Although arthritis is not identified specifically, people with the condition stand to benefit from the improvement in access to specialist care for patients suffering from any form of orthopaedic condition. I have heard what hon. Members have said about the possible need for arthritis to be specifically recognised and I certainly undertake to reflect on that advice.

Maximum waiting times have fallen over the past few years and will continue to do so. By the end of 2005, the maximum waiting time for a first out-patient appointment with a consultant will fall to three months and the maximum wait for in-patient treatment will fall to six months. That is important for patients requiring anti-TNF therapy as the drugs have to be prescribed by a consultant. Also, the older people's national service framework set standards that will improve treatment and care for a range of older people, including those with arthritis.

It is important for me to say that primary care trusts have responsibility for ensuring that local issues are carefully considered in their plans, but I stress once again that NICE guidance has to be followed. I shall certainly ensure that they are aware of their obligation in that regard.

On any issues that I have not had time to deal with, I shall write to the hon. Members who have taken part in this debate. I give the House this assurance: the Government take arthritis and rheumatism extremely seriously and we will be doing everything that we can to ensure that there is no postcode prescribing, that treatments are available everywhere and that care is to the highest possible standard—

The motion having been made after Six o'clock, and the debate having continued for half an hour, Mr. Deputy Speaker adjourned the House without Question put, pursuant to the Standing Order.

Adjourned at twenty-six minutes to Seven o'clock.