Health CommitteeWritten evidence from Arthritis Research UK (LTC 66)

1. Arthritis Research UK welcomes the opportunity to respond to the House of Commons Health Select Committee inquiry into the management of long term conditions.1 We would be pleased to expand on the points below, and to provide further information to the Committee as oral evidence.

2. Arthritis Research UK is the UK’s fourth largest medical research charity. Our vision is “a future free from arthritis”. Our remit includes arthritis and musculoskeletal conditions, which are disorders of the joints, bones and muscles—including back pain—along with rarer systemic autoimmune diseases such as lupus.2 Together, these conditions affect around 10 million people across the UK and, at £5 billion, account for the fourth largest NHS programme budget spend in England.3 ^, 4 Arthritis is the biggest cause of pain and disability in the UK, and each year around 20% of the general population consult a GP about a musculoskeletal problem such as arthritis.5 As a charity we fund research, provide information to patients and educational resources for healthcare professionals.

3. In response to the Committee’s call, this response focuses on the following areas:

Overview.

Obesity as a contributory factor to long term conditions and how it might be addressed.

The interaction between mental health conditions and long term physical conditions.

Personalised services for patients (Personalised health budgets; Care planning).

The effects of multimorbidity and ageing.

The implications of an ageing population.

Overview

4. Arthritis and other musculoskeletal conditions are primarily long term conditions. Common features of these conditions are pain, joint stiffness and limitation in movement. The symptoms fluctuate in severity over time and are often associated with psychological problems such as depression. Symptoms are often not visible to the eye and so people are sometimes not aware how severely musculoskeletal conditions can impact on people’s lives.

5. The impact and burden of such conditions is recognised by the World Health Organisation, which describes them as “leading causes of morbidity and disability, giving rise to enormous healthcare expenditures and loss of work”.6 Indeed, UK analysis of the Global Burden of Disease 2010 identifies musculoskeletal conditions as the largest contributor to the burden of disability in the UK—in 2010, such conditions accounted for 30.5% of all years lost due to disability in the UK. The study also showed the rising prevalence of musculoskeletal conditions over time.7 This upward trend demonstrates the urgent need for greater recognition of the growing burden and impact of musculoskeletal conditions, and highlights the need for an integrated and strategic response.

6. Around 20% of the general population consult their GP about a musculoskeletal problem like arthritis each year.8 That amounts to over 100,000 consultations a day, the majority of which will be for osteoarthritis and back pain, accounting for a substantial attendance and burden in primary care.9

7. Over a third of the population aged over 50 have arthritis pain that interferes with their normal activities.10 In terms of the most common form of arthritis—osteoarthritis—a recent survey found that 71% report some form of constant pain, while one in eight describe their pain as often “unbearable”.11 Back pain is a major cause of individual distress and working days lost, with one in six adults over 25 reporting back pain lasting over three months in the last year.12 Osteoarthritis of the knee causes pain and disability for one in five people in their fifties, rising to one in three by age 75. Over five million people in the UK live with osteoarthritis of the hand.13

8. At £5 billion, musculoskeletal conditions account for the fourth largest NHS programme budget spend in England.14 The high cost of such conditions reflects both the very large numbers of people affected and the substantial levels of joint replacement for severely damaged joints (the majority of which is caused by osteoarthritis), with over 80,000 hip and over 84,000 knee replacements performed in 2011 alone.15

9. The wider impact of arthritis and musculoskeletal conditions is significant with 7.5 million working days lost each year due to musculoskeletal conditions. This is second only to stress, depression and anxiety.16 The indirect costs of arthritis on society have been estimated at £14.8 billion, which includes the cost of lost work for those affected and their carers, adding to the lost quality of life experienced by those living with musculoskeletal conditions.17

Obesity as a Contributory Factor to Long Term Conditions and how it might be Addressed

10. Obesity is now widely understood to be a major contributor to diabetes and cardiovascular disease, but the public and policymakers appear to be less aware of its relationship with arthritis. Obesity is a common cause of osteoarthritis in weight-bearing joints. The earlier someone becomes overweight or obese in their lives, the greater their risk of developing osteoarthritis.18 Studies show that, compared to someone of normal weight, an obese person is 14 times more likely to develop knee osteoarthritis.19 The danger that obesity poses to health and quality of life is profound. Excess body weight not only increases levels of pain and disability but also undermines the efficacy of treatment.20

11. Maintaining a healthy weight reduces the risk of developing osteoarthritis, relieves existing symptoms and helps to prevent further deterioration of the joint. It should be recognised that much can be done to reduce the pain and disability of osteoarthritis and to support those who live with it to lead active lives, particularly through weight loss and appropriate exercise.21 Indeed, current NICE clinical guidelines state that exercise should be a core treatment for osteoarthritis.22

12. People with osteoarthritis should be aware that exercise is safe and the majority can benefit from some form of exercise. In addition to helping pain and reducing disability, the benefits of exercise can include feeling better and more self-confident. Feeling positive can affect the way a person copes with their condition, which is important for patient activation and empowerment. This can also be facilitated by care planning [see section 20 below], where people have a positive involvement in their own care.

13. Improving physical fitness is an important part of self-management and risk reduction for people with osteoarthritis. However, osteoarthritis itself can be a barrier to exercise due to pain and restriction of movement. Moreover, if a person is also obese then this too may make exercise more difficult. Healthcare professionals need to be aware of the barriers to exercise, which can include joint pain.

The Interaction between Mental Health Conditions and Long Term Physical Conditions

14. Pain is a common symptom across a range of long term conditions, including musculoskeletal conditions, and needs to be rigorously assessed. Among people with the most common long term conditions—including coronary heart disease, hypertension, diabetes and depression—around one in four will also have a chronic painful condition.23

15. There is a lack of biomedical markers for assessing pain (unlike, for example, blood pressure for hypertension or blood sugar for diabetes) which can lead to it not being addressed in a systematic way. The absence of a simple, standardised test may make routine assessment and monitoring more difficult. Pain should therefore be routinely assessed using standardised patient reported measures.

16. Persistent pain is an important symptom in its own right. If not adequately addressed, it may be a barrier to self-management of other comorbid conditions. We welcome the Government’s assertion that “everyone who suffers persistent pain should have a timely assessment in order to determine the cause of the pain—if a cause can be determined—and to advise on options for treatment, including self-help” and its recognition of chronic pain as a long term condition, “either in its own right or as a component of other long term conditions”.24

17. Depression is four times more common for people in persistent pain than for those without.25 Depression is common in musculoskeletal conditions, with 68% of people with arthritis reporting depression when their pain is at its worst.26 Over 10% of people with rheumatoid arthritis report symptoms of depression.27

18. The NICE clinical guidance for the treatment of people with osteoarthritis recommends that healthcare professionals conduct an holistic assessment of the person which includes giving consideration to their mood.28 GPs should ask about depression as well as identifying other stresses in life. Once diagnosed, taking a collaborative approach to depression in this context can aid a reduction in disability and arthritis pain.29 ^, 30

Personalised Services for Patients (Personalised Health Budgets; Care Planning)

19. Personalised health budgets

Following recent piloting, the Department of Health has announced the initial roll out of personal health budgets (PHBs) in England, which aim to give people with long term conditions greater choice, flexibility and control over their health services and the support they receive. From April 2014, all people receiving NHS Continuing Healthcare will have the right to ask for a personal health budget, whilst clinical commissioning groups and NHS England will be able to offer PHBs more widely.31

However, as arthritis and other musculoskeletal conditions were not the dedicated focus of any of the pilot sites, Arthritis Research UK undertook work to ensure the perspectives of people with these conditions was heard.

Our August 2012 report Personal Health Budgets presents the findings of our survey, workshop and policy seminar, and includes five recommendations for action as PHBs become more widely available on the NHS:

1.Those involved in care planning for people with arthritis should take account of the nature and impact of arthritis, in particular allowing for contingencies during exacerbations and for regular reviews.

2.All health professionals involved in care planning and supporting people with common long term conditions should be alert to the presence of arthritis as a major comorbidity that must be taken into account in discussions about personal health budgets as part of the overall process to meet individual needs.

3.A range of options and/or case studies should be developed for potential personal health budget holders, with an explanation that these represent illustrative but not exclusive choices.

4.Training about personal health budgets should be routinely offered as part of continuing professional development for health professionals.

5.The supportive role of third sector organisations needs to be properly described so that it can be harnessed appropriately and effectively, and adequate additional funding will need to be identified and cannot be assumed.32

20. Care planning

For many musculoskeletal conditions, such as back pain and osteoarthritis, effective day-to-day self-management can make a substantial difference to the overall impact of the condition on a person’s health and wellbeing. We believe that a systematic approach to care planning can benefit people with arthritis and other musculoskeletal conditions, and that care planning offers important opportunities to deliver improvements in their care.

Although the term “care planning” is not used directly, NICE clinical guidelines recommend the development of a management plan for people with osteoarthritis, and the offer of an annual review to people with rheumatoid arthritis.33 ^, 34 However, recent survey estimates suggest that only 18% of people with osteoarthritis and 20% of people with rheumatoid arthritis have an agreed care plan.35 ^, 36

A welcome recent development is the introduction of rheumatoid arthritis into the Quality and Outcomes Framework (QOF) for 2013–14. In addition to maintaining a register of people with rheumatoid arthritis, GPs will be incentivised to ensure patients have an annual face-to-face review, which may provide an important opportunity to systematically integrate care planning conversations for people with rheumatoid arthritis. This is the first time that measures for people with rheumatoid arthritis have been included—other measures included are fracture and cardiovascular risk assessments.37 While this new addition to the QOF represents a valuable opportunity to improve the management of rheumatoid arthritis, it is also important to ensure there is effective communication between primary and secondary care.

Musculoskeletal conditions are generally long term conditions which often fluctuate over time. For example, rheumatoid arthritis is often categorised by periods of flare-up interspersed with periods in which symptoms lessen. This is something that the care planning process should take into account. Much can be learnt from extending the model of high quality proactive care that has driven improvement in diabetes—particularly the Year of Care programme which focused on the practicalities of the delivery of care planning in primary care settings.38

Care planning should not be an isolated exercise and records and plans should be described in language which is accessible and familiar to the person involved, along with clear communication about how the process works. We welcome the development that has already been made in this area, with the recently revised NHS Constitution now including the pledge “to involve you in discussions about planning your care and to offer you a written record of what is agreed if you want one”.39

Over time, we wish to see care planning embedded across the NHS for people with long term conditions. In particular, we ask that NHS England meets the commitment set out in its mandate that “everyone with a long term condition … will be offered a personalised care plan that reflects their preferences and agreed decisions”.40

The Effects of Multimorbidity and Ageing

21. Long term conditions policy must take into account the effects of multimorbidity and ageing. Multimorbidity itself becomes more common with age and a significant proportion of those with a long term condition are multimorbid.41 For example, 82% of people with osteoarthritis have at least one other long term condition such as hypertension, cardiovascular disease or depression, which can exacerbate the impact of osteoarthritis itself.42

22. A model of care is needed which recognises that the pain and disability caused by one condition may well have an equal or greater impact on quality of life than the disorder for which someone might be being seen. There is the need to move away from a single-disease approach towards person-centred care. Interventions for any long term condition must take into account the high likelihood of multimorbidity by taking an holistic approach, addressing the needs of the whole person rather than any one specific condition in isolation.

The Implications of an Ageing Population

23. Musculoskeletal conditions are life-long conditions causing pain and disability. The risk of developing a musculoskeletal condition increases with age so the ageing population represents a growing challenge. A recent report from the House of Lords Select Committee on Public Service and Demographic Change suggests that the number of people in England aged 65 and over in 2030 will be 51% higher than in 2010.43 Indeed, projections suggest that the number of people with arthritis is set to increase by over 50% in 2030.44 These increases will have a major impact on the availability and delivery of services, with large increases in demand for health and social care.

24. UK data from the Global Burden of Disease study shows that life expectancy in the UK has increased over the last two decades. This means that more people are living longer where the prevalence of chronic disabling conditions is higher. The study shows that the burden of musculoskeletal conditions is rising, largely because more individuals are living into the age groups at highest risk. Present trends suggest that musculoskeletal conditions in the population will only increase further, with the authors of the UK report suggesting the area requires “urgent policy attention”.45

9 May 2013