Arthritis Care NHS Next Stage Review Submission 11 January 2007 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. Current issues Due, in part, to the numbers involved and the high proportion of GP visits, people with arthritis have a huge stake in an effective NHS. Currently, people with arthritis face a number of issues when accessing NHS services: 1. Quality and Outcomes Framework (QOF) 1.1. 1 in 4 GP visits relate to a musculoskeletal condition, yet they do not currently appear in the QOF. Although the QOF represents a relatively small percentage of overall GP funding, it works very effectively as an incentive mechanism and 99% of GP surgeries subscribe to it. The absence of arthritis from the QOF is having a negative impact on the treatment of people with arthritis – a survey of rheumatologists in 20061 indicated that two thirds of respondents thought that the omission of arthritis from the QOF was either worsening or making no impact on the services given to people with arthritis. Primary care represents a crucial time for diagnosing and treating arthritis and without the appropriate incentives to take steps to improve services for people with arthritis, positive outcomes and effective therapy are potentially being limited while there is an increased likelihood of inappropriate referrals. 1.2. Relevant to: quality improvement; workforce; primary and community care strategy; systems and incentives. 1.3. Barriers: Provides a perverse incentive to not offer the best possible services to people with arthritis as the financial rewards to concentrate on other conditions are greater. Impedes long-term monitoring of arthritis as there is no specific commitment to conduct regular health checks as with conditions such as asthma or diabetes. 1 Access to TNF-α inhibitors for adults with rheumatoid arthritis: A Report by the British Society for Rheumatology and the Arthritis & Musculoskeletal Alliance (2006) The absence of musculoskeletal conditions does not recognise the developing risk factors such as obesity and an ageing population. Both will have an impact on the prevalence of arthritis, particularly osteoarthritis and early intervention would mitigate the health issues that emerge from these trends. Strong potential to contribute to greater health and social care needs as slow or inappropriate diagnosis will lead to a faster progression of the condition. The effects of unnecessary progression can mean joint replacement, disability, mental health issues and premature mortality. The absence of musculoskeletal conditions from the QOF does not recognise the 1 in 4 GP visits with a related complaint. The effects of this absence can be seen in the waiting times for orthopaedic care. This represents a shift of the burden of care away from primary care settings in cases where recourse to orthopaedic intervention could have been avoided. 1.4. Changes: Include musculoskeletal conditions in the QOF or reassess primary care incentive mechanisms. 2. Musculoskeletal Services Framework (MSF): 2.1. In 2006, the Department of Health, in collaboration with the Arthritis and Musculoskeletal Alliance (ARMA), Arthritis Care and the musculoskeletal conditions community, produced the MSF. The framework resulted from consultation with people with arthritis, health professionals working with musculoskeletal conditions, and patient groups. It sets out a patient pathway model that reflect the needs of people with arthritis, initiating straightforward measures such as an effective triage system, passing on key information and advice to patients, and effective use of multi- disciplinary teams. 2.2. Despite this being a large and well-developed piece of work, implementation has been sluggish and many PCTs are not even aware of its existence. Recent parliamentary questions have revealed that the MSF is just “best-practice” guidance and not a mandatory framework. This is limiting effective service redesign and restricting the numbers of people with arthritis who are able to obtain the best possible service and outcomes. It uncovers an inequality for those people who live in PCTs that do not utilise the framework. 2.3. Relevant to: quality improvement; innovation; workforce; leadership; primary and community care strategy; informatics; systems and incentives. 2.4. Barriers: There is little or no impetus to utilise the systems described in the MSF. The national service framework for coronary heart disease (CHD) has made huge improvements to the quality of care for people with CHD as its contents set out the level of service that people should expect throughout the UK, not simply “best-practice.” Despite the level of work and the Department of Health’s willingness to produce the MSF, the framework has not been sufficiently disseminated to offer widespread implementation. In combination with the absence of a directive to implement it, the proven model of care it describes is not reaching many people with arthritis. The MSF has been in some part promoted as a means of achieving the 18 weeks targets in orthopaedics. Whilst this has been helpful in raising the profile of the MSF, it is a limited view of the benefits of the framework and greater emphasis should be placed on the long-term needs of people of arthritis that the MSF sets out to address. 2.5. Changes: A strict directive that ensures the implementation of standards set out in the MSF. Use of these standards to ensure that all people with arthritis and musculoskeletal conditions can expect the same level of care, regardless of where they are in the country. Monitoring in place to assess where this is not happening. 3. Access to rheumatology 3.1. The British Society for Rheumatology (BSR) has recommended that there should be 1 full time consultant rheumatologist for every 85,000 people2. They have placed the actual figure at 1 in 136,206 people3. Rheumatologists and are vital to the effective diagnosis and, together with nurse, the on-going treatment of people with arthritis. The progressive nature of arthritis requires that diagnosis is as quick as possible and any changes in the state of the condition are discovered early and treated appropriately. If there are limited numbers of rheumatologists and nurses, waiting times risk being long and a person with arthritis risks irreversible joint damage and a reduced quality of life. 3.2. Relevant to: quality improvement; workforce. 3.3. Barriers: Too few rheumatologists and clinical nurse specialists. Under-staffing in rheumatology has, in many places, led to unacceptably long waiting times, identified as amongst the worst and a key target for the 18 weeks scheme. Orthopaedic outcomes are similarly affected with procedures becoming increasingly difficult as time passes. This can also mean that the relatively simple procedures are not able to be conducted due to 2 G Turner et al - Consultant Rheumatology workforce in the UK: changing patterns of provision 1997-2001 (Journal of Rheumatology 2002 41:680-684) 3 Ibid. chronic joint damage rendering more complex and invasive procedures necessary. 3.4. Changes: Greater development of rheumatology workforce, including greater support for clinical nurse specialists. 4. Information 4.1. The effective management of long-term conditions is hugely dependent on access to good information. Arthritis Care believes that the best person to inform their treatment are the service-users themselves, provided they are well informed and can easily access appropriate advice and support. Currently, many people with arthritis find that on diagnosis, they leave a healthcare setting with very little information about the condition and a medically focused perception of what the condition means to them. This can leave them feeling isolated, prone to anxiety, and unsure of how best to manage their condition and find support in doing so. The availability of information must also be ongoing as they may be living with their condition for many years. 4.2. A person that is able to take control of their arthritis and begin making the necessary adjustments to their day-to-day lives, has a far greater chance of slowing the progression of their condition, helping to alleviate chronic pain, and ameliorating the chance of developing co-morbidities such as depression. 4.3. Relevant to: quality improvement; primary and community care strategy; informatics. 4.4. Barriers: People are not appropriately sign-posted to information resources, either at the point of diagnosis or during their long-term treatment. Self-management and support services are either not provided or not promoted by healthcare professionals. We are frequently hearing from our members that they are being told that “nothing can be done” at diagnosis, especially in cases of osteoarthritis. This ignores the numerous measures that can be taken to help the management of a person’s arthritis, particularly through services offered by organisations such as Arthritis Care. GPs are not typically aware of these services. Risk factors such as the connection between osteoarthritis and obesity are not sufficiently communicated as part of the NHS’s public health responsibilities. 4.5. Changes: There should be greater awareness of arthritis and musculoskeletal conditions, both among health professionals and the general public. Information prescriptions, which are due in 2008 and make reference to services that organisations like Arthritis Care provide, should be widely utilised in a form that effectively communicates important information to people with arthritis. They need to be robust, fully accessible, and come with an effective incentive for GPs to use them. This would make effective use of the services and expertise offered by voluntary organisations. Self-management and support services should be viewed as an essential component of a person’s long-term care. Wider use would be achieved through effective collaboration between the public and voluntary sectors. This would include developing the resources available to third sector organisations. Arthritis Care offers a range of services that aid self-management such as helplines, information services, self-management training, peer support, and an active and extremely popular online forum. Awareness of these services should be built into the greater collaborative efforts as described above. 5. Accessible and comprehensive services 5.1. People with arthritis need to access a wide-variety of services to best manage their condition. Services such as physiotherapy and hydrotherapy can often be vital to a person with arthritis for maintaining a good level of mobility, relieving chronic pain, and slowing the progression of their condition. However, the provision of hydrotherapy, for example, can be extremely fragmented with many areas of the UK offering limited access to pools. This situation is worsening as we are learning of more and more pool closures. Other services such as occupational therapy, podiatry, and self-management training should be offered in accessible locations and either universally provided or clearly signposted. 5.2. Relevant to: quality improvement; workforce; primary and community care strategy. 5.3. Barriers: Resources such as hydrotherapy are not offered widely enough. For example, a service user was told that when the hydrotherapy pool at the Royal Free Hospital in North London was closing for refurbishment, there would be no accessible NHS alternative. This is extremely disappointing in an area as densely populated as London. Hydrotherapy pools are often one of the first victims of funding cuts. Due, in part, to the lack of implementation of the MSF, important additional management techniques for people with arthritis are not integrated into their care pathway. Appropriate use of services such as physiotherapy and mental health support in primary care settings should run alongside and be complemented by self-management and occupational therapy. Physiotherapy is not always being offered early enough in a person’s pathway of care. This is often vital for managing a person’s arthritis and any delays in offering physiotherapy could have a long term impact on the progression of the condition. 5.4. Changes: Wider availability of hydrotherapy facilities. Greater resources for physiotherapy. Holistic management of long-term conditions that directs service-users to complementary services, precipitating the implementation of the MSF. 6. Joined-up working 6.1. A person with arthritis can expect to interact with a wide variety of health professionals and need to visit a variety of healthcare settings, so patient information should be easily accessible to all relevant health practitioners. A person with arthritis may have to repeat their symptoms and concerns to a succession of health practitioners along their care pathway. This can lead to distress and reduces the time available in the consultation appointment to explore symptoms and the progression of the condition. 6.2. An effective treatment plan will often require close collaboration between various health and social care professionals and a joined-up approach to communicating and planning this process, as described in the MSF, has huge benefits for service users. 6.3. Relevant to: quality improvement; leadership; informatics; systems and incentives. 6.4. Barriers: Limited capacity for detailed communication between healthcare settings. For example, communicating in full a rheumatologist’s investigations to physiotherapists or GPs and vice versa. Healthcare professionals acting in isolation with little or no joined-up planning when deciding on a service-user’s care pathway. Offering services on multiple sites. Not being able to see the same GP or consultant on return visits to a healthcare setting. Little or no communication between health and social care settings. 6.5. Changes: Through the implementation of the MSF, a care pathway is planned with the service-user and communicated between the health professionals who will be involved in the pathway. As the common factor in the process, the service-user must be kept informed and involved to enable the best outcomes for them and NHS resources. Greater prevalence of well-planned multi-disciplinary teams. Links should be established between health and social care services to meet the day-to-day needs of the service user. Service-user groups should also be built into this process, utilising some of the services highlighted in point 4.5. This will aid service-user empowerment and self-care. 7. Implementation of NICE guidance 7.1. PCTs are legally obliged to provide funding for treatments recommended by NICE within three months of the guidance being published. In some parts of the country, this is not happening. A 2006 study by the British Society for Rheumatology and ARMA4 found that 20% of rheumatology units were unable to prescribe anti-TNF medication to patients with rheumatoid arthritis (RA), despite being eligible in accordance with NICE guidance. 7.2. Relevant to: quality improvement; innovation; workforce; leadership; primary and community care strategy; systems and incentives. 7.3. Barriers: The most common barriers identified by the study were: o PCTs had overspent and could not release the funding; o PCTs had not yet released the funding; or o there was a lack of nursing support and infrastructure to deliver the treatment, even though the funding had been allocated. The obligation to implement NICE guidelines is not being sufficiently monitored. 7.4. Changes: Strict monitoring, and clearer lines of accountability, for the implementation of NICE guidance. Ensuring that funding is available to achieve implementation. Ensuring that the services offered to people with arthritis are not dependent on where they live. 8. Establishing NICE guidance 8.1. In establishing the basis for NICE guidance, appraisal committees make a judgement on the clinical and cost-effectiveness of prescribing a drug. However, this analysis is made on a purely medical basis and ignores the wider, diffuse costs to the individual, society, and the public purse of not allowing access to treatments. For example, a person with severe rheumatoid arthritis may be severely disabled without access to advanced treatments, potentially causing them to leave work, rely on their families and state benefits, and become generally less active members of society. This further contributes to co-morbidities such as depression. An assessment of quality adjusted life years (QALYs) requires a broader analysis, taking into account such eventualities. In combination with the slow or partial implementation of NICE guidelines by some PCTs, many people with a severe, but treatable, condition are being let down. 8.2. Relevant to: quality improvement; innovation; systems and incentives 8.3. Barriers: 4 Access to TNF-α inhibitors for adults with rheumatoid arthritis: A Report by the British Society for Rheumatology and the Arthritis & Musculoskeletal Alliance (2006) The remit for establishing guidance does not take into account the overall costs to the public purse of not accessing treatment. For example, the cost of relying on welfare. The need to take into account the wider benefits to society was highlighted in the recent Health Select Committee report investigating NICE. The cost-effectiveness model may not take sufficient account of the difference certain drugs can make to a person’s life. For example, the benefits to a person’s general health if allowed to exercise and be productive, and the wider benefits to society. 8.4. Changes: NICE guidance development process should be amended to include update of QALYs to include wider economic costs and co-morbidities. 9. Commissioning 9.1. The needs of service-users should be considered at all stages of the local commissioning process. Close consultation with service-users, health specialists, and service-users groups places service-user needs at the centre of commissioning and helps to develop expert users that can scrutinise the application of new services. 9.2. Relevant to: quality improvement; innovation; primary and community care strategy; systems and incentives. 9.3. Barriers No standard practice of extensive user-involvement in the commissioning process. There is a lack of skills/knowledge base amongst commissioners to do this effectively. Uneven participation in the existing consultation process that relies on organised groups and expert users, which can cause inequalities in the level of involvement depending on locality. People with long-term conditions and disabilities are not sufficiently consulted as their views are not actively sought. 9.4. Changes: Service users should play a central role in the commissioning process and the needs of service users should be paramount. People with long-term conditions and disabilities should have the widest possible opportunity to become involved in local commissioning and decision-making and be supported to do so. Wider utilisation of schemes that inform service-users of how to influence commissioning and what level of service they can expect. Greater collaboration between commissioners and service-user organisations in consultation.
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