1.  EXECUTIVE SUMMARY

  1.1  Nine million people in the UK are affected by arthritis, including 8.5 million with osteoarthritis, 400,000 with rheumatoid arthritis, and approximately 12,000 children with juvenile idiopathic arthritis. An effective NHS is vital to ongoing management and treatment of these conditions. The health of a person with arthritis requires effective self-management, monitoring of the progression of their condition, and close monitoring of drugs which often have harmful side-effects. Many people with arthritis rely on good and early diagnosis, access to life-changing drugs, access to a number of support services such as physiotherapy and counselling, and reactive medical care such as surgery.

  1.2  Poor treatment exacerbates existing equality issues. For example, poor services for people with arthritis that do not reflect their needs could lead to long-term disability and often to mental health co-morbidities, forcing them to leave work, rely on low-income benefits, and worsening their bio-psychosocial health. Since it is shown that people with disabilities are twice as likely to live in poverty[193], any factors that contribute to disability must be strictly avoided

  1.3  GPs represent a very important element in the diagnosis and treatment of arthritis, indeed 1 in 4 GP visits are related to musculoskeletal conditions. Arthritis and musculoskeletal conditions do not, however, appear in the Quality and Outcomes Framework (QOF), which was introduced in part to prevent inequalities in care. By only providing incentives to monitor and diagnose certain conditions, we are concerned that many people with arthritis may not be receiving vital early stage care and long-term monitoring. This undermines effective musculoskeletal service provision and needs to be addressed, either by inclusion in the QOF or by reassessing incentive mechanisms for primary care.

  1.4  The NHS is a central plank in the management of arthritis and any potential for inequality must be avoided. Failing to produce a consistent service could have a profound effect on the millions of people with arthritis in the UK. Arthritis Care believes inequalities are occurring where established guidance on care pathways and treatments are not being uniformly adhered to. For example:

—  Where some Primary Care Trusts (PCTs) do not facilitate the prescription of treatments such as TNFalpha inhibitors, in line with NICE guidelines, people with the most severe forms of arthritis are at risk of severe disability and premature mortality.

—  Where effective and established service frameworks are not adhered to, the chances of positive health outcomes are significantly diminished. On this basis, we will talk about the Musculoskeletal Services Framework later in this document.

  1.5  There is an overall lack of priority for those policies to which no target is tied. There should be mechanisms in place to ensure that evidence-based frameworks are followed, to ensure delivery of NICE guidance, and to maintain a primary care system that treats conditions equally and has appropriate resourcing. Without direction on such issues, there can be little assurance that an effective health service is being delivered universally.

  1.6  As part of its responsibilities of providing information and support, it is essential that the role of the NHS in public health work is strengthened. This must include producing or sign-posting to good quality information, promoting healthy lifestyles, and highlighting typical health risks. Joined up work on disseminating information and providing support services is very important not only to long-term conditions, but also to public health in general. Arthritis does not feature prominently in public health messages and the provision of self-management support is limited. Seeing as good information of this nature is vital to effective outcomes for people with arthritis, limited and uneven provision of information will inevitably contribute to health inequalities.

  1.7  Service users should be consulted during the commissioning process of local health services, however this is still extremely rare. The lack of effective consultation will impact on areas that are unable to organise effectively and create uneven services in terms of quality and overall effectiveness to meet the needs of service users. It is vital to enable local communities to engage in reducing health inequalities, with a particular effort to include people with disabilities and long-term conditions as service users in this process.

2.  INTRODUCTION

  2.1  Established in 1947, Arthritis Care is the UK's leading user-led organisation benefiting people with arthritis. Our mission is to offer the nine million people with arthritis in the UK the information and support they need to make informed choices about managing their arthritis, to reach their potential in society and participate in their communities.

  2.2  Factors such as established treatment mechanisms, access to good information and support services, access to vital drug therapies, and self-management are central to a good quality of life for people with arthritis. People who are able to expect these elements in their care can also expect to have better health outcomes and be able to manage their condition more effectively.

  2.3  A lack of universality in what people with arthritis can expect from healthcare services represents a significant health inequality. This occurs as a result of the absence of a joined-up approach to healthcare; incentive mechanisms such as the QOF; and weak implementation of clinical guidelines and Department of Health policies.

  2.4  Based on the following information and considering the recommendations at the end of this paper, we suggest that such inequalities in the effectiveness of services currently exist and can be improved.

3.  FACTUAL INFORMATION

3.1  The Quality and Outcomes Framework

  3.1.1  Long-term risks to people with arthritis are exacerbated by the lack of effective early intervention and long-term monitoring include loss of mobility, joint-replacement surgery, and a greater overall impact on health and well-being. This leaves people more at risk of having to leave work and claim state benefits, contributing to non-health related inequalities such as those relating to employment opportunities and the welfare trap. These factors further impact on physical and mental well-being.

  3.1.2  Despite the prevalence rate of arthritis and the fact that 1 in 4 GP visits relate to a musculoskeletal condition, arthritis does not feature in the Quality and Outcomes Framework (QOF). By incentivising a focus on some conditions, people with other conditions that are omitted, such as arthritis, are missing out on key, valuable interventions.

  3.1.3  The Arthritis and Musculoskeletal Alliance (ARMA)[194] published a study in 2006 which revealed that two thirds of the rheumatologists surveyed believed that the omission of arthritis from the QOF had either made service provision for people with arthritis worse or not changed it at all. Health inequalities arise through the negative impact of the QOF and are widened as services for other conditions that are in the QOF improve. People with arthritis are being left behind.

  3.1.4  There is a further impact on people's long term monitoring. People with asthma and diabetes, two conditions that feature in the QOF, are invited annually for a flu jab along with a review of their treatment. In comparison, people with arthritis are not routinely invited to important health checks. They are more likely to visit their GP only if they are pro-actively seeking particular assistance or support. It is known that vulnerable groups or those with the highest risk of experiencing inequalities are less likely to access services pro-actively and without the impetus that QOF measures represent, those health inequalities are unlikely to improve.

  3.1.5  The QOF is having a further negative impact on an information prescription pilot Arthritis Care is currently involved in[195]. The scheme allows health professionals to prescribe information about a long-term condition as they would normally prescribe medicine. The numbers of people with arthritis being issued an information prescription in comparison with people with asthma and diabetes, which feature in the QOF, is very low. Without being in the QOF, GP's incentive to participate in such schemes is diminished, even though this represents an excellent opportunity to provide information to the people that really need it.

3.2  Information services, including public health

  3.2.1  When a person is diagnosed with arthritis, it is extremely important that they receive up to date information on how they can manage their condition. Supporting people with arthritis to self-manage is a key component in preventing health inequalities. Knowing how to manage their arthritis and understanding what it means to their life is important for empowering individuals and also equips them to maximise their own health outcomes.

  3.2.2  Organisations such as Arthritis Care offer a range of self-management training courses, as well as information and support from a variety of resources such as helplines, peer support groups, an online discussion forum, and information booklets. Appropriate sign-posting at the point of diagnosis will help people with arthritis to access such services and help to generate a wider knowledge base from which individuals can help to manage their condition effectively and perhaps assist others. Enabling people to take these steps is useful in narrowing health inequalities and reduces the burden of care on the NHS. It can also help them to be more empowered in other aspects of their life, impacting on some of the causes of health inequalities such as unemployment.

  3.2.3  Arthritis Care recently conducted a survey of over 1,500 people with arthritis and they called for a greater awareness of arthritis amongst the general public and health professionals. A general lack of awareness can often lead to health inequalities as people can find it difficult to ask for or achieve adjustments, such as changes to the workplace to help a person with arthritis to stay in work. Similarly, differing levels of knowledge amongst health professionals will create disparities in both the diagnosis and treatment of arthritis. The NHS has a responsibility to create training mechanisms which best serve people with arthritis and must communicate to the general public the risk factors of certain forms of arthritis and the realities of living with the condition.

  3.2.4  In widening the information prescription scheme detailed above, it is important that the NHS does not exacerbate inequality by making materials inaccessible or that do not cater for people that most need them, such as using online information for people that may not have private access to the internet.

3.3.   Implementation of the Department of Health's Musculoskeletal Services Framework

  3.3.1  An effective framework setting out principles for care is extremely important in reducing inequalities in the health service. If a person presents with symptoms of a musculoskeletal condition to their GP or other health professional, slow or incorrect diagnosis and referral could have a significant effect on the long-term outcome, treatment, and management of their condition. The Musculoskeletal Services Framework (MSF) sets out protocols that make visits to primary care locations more effective and creates links with secondary care services and self-management support, enabling services users to take a greater control of their condition. Inconsistent application of these protocols cultivates inequalities as the major benefits of the MSF will extend only to those in a PCT that decides to adopt it, not, as should be expected, to every single service user.

  3.3.2  The MSF, published in 2006 by the Department of Health, was produced in collaboration with Arthritis Care, ARMA, and the wider musculoskeletal community. The framework was based on service-user feedback and specialist advice and forms the basis of an effective patient pathway through primary and secondary care which meets the needs of people with arthritis and other musculoskeletal conditions.

  The MSF represents a large piece of work on the part of the musculoskeletal community and the Department of Health, with massive potential to reduce health inequalities. Despite this awareness remains low, indeed, discussions with commissioners in an one Strategic Health Authority (SHA) revealed they were not even aware of its existence.

  3.3.3  Please see the following parliamentary question from 25 July 2007:

Greg Hands (Con):   To ask the Secretary of State for Health what steps have been taken to implement the Musculoskeletal Services Framework; and if he will make a statement. [151486]

Ann Keen (DoH):   The Musculoskeletal Services Framework was published as good practice guidance, and as such the Department is not mandating its implementation. However, adopting this good practice will help organisations towards achieving the 18 weeks target.

  The outcomes of poor services can be avoidable disability, living in chronic pain, a greater potential for costly major surgery in the long term as well as increased mortality. By prescribing the MSF as best-practice rather than enforcing it as with other service frameworks, the Department of Health risks developing service inequalities. Consequently, the systems laid down in the MSF will not enjoy the successes of other protocols such as the national service framework for coronary heart disease which has enabled considerable progress in improving heart disease services since its publication in 2000. This can be avoided by a clear directive on implementing the MSF.

  3.3.4  While it is very important that the MSF is cited as a useful tool to meeting 18 weeks targets, it is equally important that the framework has a longer-term role in ensuring the consistent provision of services to people with a range of conditions that could be present for the rest of person's life, especially since many can occur at any age.

3.4  Access to anti-TNF treatment

  3.4.1  PCTs are legally obliged to provide funding to meet the recommendations of NICE guidance within three months of it being published. We know that these are not met consistently. (The NICE appraisal process has been discussed in a previous inquiry and we will not go into detail about that process in this paper, though there are over-arching issues that we hope that these inquiries will uncover).

  3.4.2  NICE has established guidance for treating severe rheumatoid arthritis (RA) by using TNFalpha inhibitors. In a survey in 2006, ARMA discovered that 20% of rheumatology units were unable to prescribe TNFalpha inhibitors to every person with RA identified as eligible in accordance with guidance. The most common reason for this was that PCTs had overspent and would not release the funding.

  3.4.3  Furthermore, 15% of units stated that a cap had been imposed on the number of people with RA to whom they could prescribe TNFalpha inhibitors. In some cases, this meant that only 10 people with RA had the available funding for treatment compared with up to 500 people in units that did not have a cap.

  3.4.4  This is an example of the NHS contributing to health inequalities. An effective means of enforcing the availability of funding to PCTs to enable them to follow NICE guidance would have the effect of challenging these inequalities.

3.5  Commissioning

  3.5.1  Allowing service users and interest groups to input into the commissioning process enables healthcare providers to offer more targeted services that meet the needs of service users, particularly those with long-term conditions. Without such a consultation process, the quality and effectiveness of services risks being uneven, and risks not being representative of the needs of service users merely from the lack of opportunity to influence the process. While recognising the need for flexibility in delivery, basic standards in this process need to be adhered to. Such standards are currently very patchy.

  3.5.2  Creating expert service users is a further positive step towards reducing health inequalities. Advising service users on how to effectively interact with local health authorities enables monitoring of service provision and involves service users in the decision making process.

  3.5.3  Arthritis Care runs a training course which gives service users the skills and knowledge they need to influence local health decision-makers. This has enabled them to contribute effectively to service development and has proved fruitful for service users, deliverers, and planners alike. This is a useful model for service user involvement in commissioning.

  3.5.4  The benefits of this user-involvement can be seen in the following example: an ARMA local network[196] became actively engaged with the commissioning process in the Morecambe Bay area, which spans North Lancashire PCT and Cumbria PCT, when proposals were announced by local NHS organisations regarding the establishment of Clinical Assessment and Treatment Services (CATS). These plans, which outsourced services to the independent sector, had been developed in isolation from public consultation and as a consequence they did not reflect the needs of local service users. The network worked in partnership with NHS employees and local groups to ask for a full public consultation on these proposals.

  Once the local NHS organisations agreed to hold a consultation, the ARMA local network wrote letters to decision-makers to determine how the changes would affect service users and met with PCTs, managers and officials about the proposals. The network members also attended public meetings and encouraged residents to respond to the consultation, as well as submitting their own response. Following the consultation, the CATS proposals have changed significantly, and the ARMA local network ensured that the voice of service users and other key stakeholders was heard clearly in the deliberations. The service user lead continues to have a direct dialogue with the commissioning organisations as the project develops.

  3.5.5  In this instance, obtaining the view of services users was not routinely done. Had the local network not become involved, the service would not have represented the needs of service users to the extent it was eventually able to. This absence of direct and thorough consultation could have a direct impact on health inequalities, especially in those areas that are not able to organise effectively. This could have a particular impact on people with arthritis and other long-term conditions as poor services can lead to early disability, being unable to work and relying on alternative state benefits, therefore compounding wider inequality issues.

4.  RECOMMENDATIONS

  4.1  A comprehensive review of the QOF should be undertaken to assess its impact on services. This should include an examination of how primary care incentive schemes impact on the level of care and priority given to all service users, including people with arthritis.

  4.2  Effective information services and sign-posting to best utilise available resources and help people with arthritis to self-manage. Improved resourcing of voluntary organisations such as Arthritis Care to deliver these services would help in achieving public health aims by utilising existing high quality services.

  4.3  Top level commitment to the implementation of the Musculoskeletal Services Framework at all levels to ensure that the quality and effectiveness of services are of the right standard throughout the country.

  4.4  Enforcing and monitoring implementation of NICE guidance so that all patients have access to essential treatments.

  4.5  National and local leadership is required to link health policy and service delivery with that delivered by other government departments, especially the Department for Work and Pensions. There also needs to be greater collaboration between the health service and social care providers, the voluntary sector, and employers to improve the opportunities of people with arthritis and other long-term conditions.

  4.6  Meaningful involvement and support for service users in all stages of commissioning to place them as a central component in decision-making and to better monitor the potential for health inequalities.

January 2008

194   ARMA is the UK umbrella organisation of arthritis service user groups, health professionals and researchers. Back

195   This is a Department of Health pilot scheme in which Arthritis Care has collaborated with Asthma UK, Diabetes UK, and Hammersmith and Fulham PCT. Back

196   ARMA local networks are made up of individuals and groups representing ARMA locally. Back