Darzi Review Submission by hilen


									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.

  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
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

  G Turner et al - Consultant Rheumatology workforce in the UK: changing patterns of provision
1997-2001 (Journal of Rheumatology 2002 41:680-684)
       chronic joint damage rendering more complex and invasive procedures
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
4.3. Relevant to: quality improvement; primary and community care strategy;
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
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
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

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
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
      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
    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
    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:

  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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