Health CommitteeWritten evidence from Arthritis Care (LTC 02)

Introduction

Arthritis Care is the UK’s leading organisation working with and for people with all forms of arthritis. People with arthritis are at the heart of our work. We have around 13,000 members, who are involved in all of our activities and direct what we do. We run a national telephone helpline and have a network of 190 local groups across the country, which together with our internet forums and self management programmes bring people together to support one another in living life to the full.

Arthritis is not only the most common MSK condition, it is the most common of all long term conditions, comprising 28% of the total, followed by heart conditions (16.8%).1 High quality and efficient arthritis healthcare services are essential to ensuring the NHS remains financially viable:

Musculoskeletal conditions are now the fourth highest area of NHS spend.2

The cost of treating MSK conditions is rising rapidly, and has increased by 51.6% since 2003–04.3

Response to Specific Issues

The scope for varying the current mix of service responsibilities so that more people are treated outside hospital and the consequences of such service re-design for costs and effectiveness

A fundamental tool to delivering more out-of hospital care is risk profiling. Systematic involvement of patient organisations will help deliver smarter risk profiling, eg Arthritis Care, though our proposed “Arthritis Watch” project, will be conducting national mapping of need for, and shortfalls in, services.

There are also immediate savings that can be made by improving care for people with long term conditions (LTCs). For example, improved care for patients with bone and joint problems can reduce hospital stays and reduce inappropriate hospital referrals; hospitals in NHS Lothian have reported making savings of nearly £250,000, by speeding up the recovery time of such patients.4

The readiness of local NHS and social care services to treat patients with long-term conditions (including multiple conditions) within the community

When addressing this issue it is helpful to consider what patient outcomes such a shift in services should deliver. Supported self-management (SSM) must be seen as a fundamental delivery goal of shifting care from hospital to community. Patients who are effectively equipped to self-manage and engage in meaningful shared decision making are able to achieve a better quality of life and become less of a burden on the system. There is evidence that even the most challenged patients can be encouraged to manage actively.5 Over the past 20 years Arthritis Care has delivered over 1000’s of self-management training courses. We feel that we can bring our experience of working with people on self–management to bear to help shape and deliver SSM elements of the strategy.

The practical assistance offered to commissioners to support the design of services which promote community-based care and provide for the integration of health and social care in the management of long-term conditions

Assistance to commissioners must be based on a good understanding of the realities of commissioning LTC services. Recent research by the Nuffield Trust into commissioning care for LTCs6 has concluded that services for those with long-term conditions are not easily “commodified” within a purchaser–provider market. Local commissioners are not following the standard purchaser—provider commissioning model, but are developing an alternative approach based on closer working between providers and commissioners. The report highlights a number of factors that have helped deliver effective LTC commissioning, eg:

A new way of sharing financial and service risk, where providers of care take on some or all of the commissioner’s risk, being responsible for assuring a set of services that will meet the needs of a particular local group of patients, such as the frail elderly, or vulnerable families.

Regularly canvassing the views of local service users and providers about the performance of commissioners.

Regular survey of local clinicians about their involvement in commissioning and whether they think it is useful.

As well as addressing generic issues such as integration & self management, commissioners need to address LTCs from the perspective of how they can improve on a condition—specific basis. The services for each condition needs to be looked at to see how it can improve, offer better value for money, and integrate better with other services. The 3rd sector has a wealth of knowledge it can impart, at both a national and local level, of quality of existing services and levels of unmet need.

On a national level, condition—specific strategies can deliver impressive results. For example, the NHS national heart disease and stroke strategy has in recent years delivered an track record of substantial improvements: heart deaths have been cut by half, with a similar level of success for stroke survival, the fastest improvement in Europe.7 This has been achieved by collaborative working in a number of ways: encouraging specialists to form local clinical networks;8 preventing unproductive competition between consultants, and concentrating specialist care.9

These successes have only been possible with centralised strategic planning and a condition—specific focus, and provide a strong argument for a national MSK strategy which encourages similar coordinated ways of working for MSK services at local commissioning, regional and national levels.

The ability of NHS and social care providers to treat multi-morbidities and the patient as a person rather than focusing on individual conditions

Managing co-morbidities is one of the most significant challenges for a LTC strategy. Arthritis has strong links with other co-morbidities, eg cardiovascular and COPD. An Arthritis Care supporter recently described their experience of lack of coordination thus:

I am currently under the care of four different consultants at the same hospital & there appears to be great difficulty in having appropriate & timely communication between them & myself. If there could be one consultation involving all Specialists, say every three months, I would need fewer appointments are get better, faster care. As often one Consultant has to wait for the results or decision made by another Consultant.

Evidence from patient organisations such as National Voices shows what people most want is access to care coordinators who are able to arrange packages of care, ensure that specialist services are joined up, that patients are treated by the right people and in the most appropriate location.10 The care coordinator should be tasked with conducting “whole person” needs assessments at the beginning of an individual’s care pathway, and for collaborative care planning with patients. This role may be delivered by primary care nurses, but can also be done by trained and well supported volunteers; something Arthritis Care is piloting now. Care coordinators should also function as an “internal” patient advocate, arguing for patients when the system under-performs.

Current estimates put the number of LTC patient with care plans at 12%.11

Another essential component to dealing with co-morbidities is setting up generic multidisciplinary teams (MTDs), which aim to move away from single-disease silos of care and to stop patients falling through the gaps as they are shifted from GPs to social workers, outpatients, etc. Integrated teams do not have to work under the same roof, but they must meet regularly—in person or through teleconferencing—to review at-risk patients and jointly decide care packages. MDTs should comprise GP, nursing and therapy input, as well as case co-ordinators.

Obesity as a contributory factor to conditions including diabetes, heart failure and coronary heart disease and how it might be addressed

In addition to the conditions cited above, obesity is of equal importance to successfully tackling arthritis. There is evidence that increased services to promote lifestyle alterations would reduce the risk of developing osteoarthritis, eg strengthening exercises, general fitness, anti-obesity programmes and the use of supportive appliances.12 Up to half of all knee osteoarthritis is theoretically preventable by weight reduction and up to a third is preventable by preventative advice on activities that lead to joint injury, (ibid). A national nutrition strategy under Public Health England would be a way to address poor diet and over-eating, with direct attention paid to the role of the major food companies.

Current examples of effective integration of services across health, social care and other services which treat and manage long-term conditions

See the comment on multidisciplinary integrated teams in the section on co-morbidities.

When thinking about better coordination it is important to have an understanding of all the ways it should impact on services, particularly the need for improving the connections/interfaces between services, eg:

Improve speed of referral to specialists, through co-location, specialist outreach clinics, etc.

Improved handover systems, to prevent inappropriate medication or lack of treatment.

Appropriate discharge and aftercare planning, to reduce “revolving door” patients.

These issues highlight the need for a variety of different types of coordination, eg parallel coordination between different care providers, and sequential coordination, ie the transfer of responsibility between healthcare professionals.

The ONEL project in Barking and Dagenham is an example a joint health and social care project, aimed at meeting the needs of and maximising the quality of life for people with long-term conditions. A crucial element of its success has been gaining of detailed knowledge of the actual problems people in the area faced with their health and social care services. This highlights the need for commissioners to work out local solutions that are tailored to meet the needs of their areas, not just seek to impose “off the peg” examples of good practice.13

Torbay Care Trust14 is another oft-cited example of integrated health and social care, in this case, in respect of care for the elderly. Salient features include:

Initially, the creation of an integrated health and social care team in 2004, which worked with a number of general practices to help older people most at risk.

Use of care co-ordinators, who became the main point of contact for referrals, and worked closely with other professionals to put in place care packages.

Creation of a care trust, which fully integrated NHS organisations responsible for commissioning and providing community health and social care services.

Key factors in delivering these changes included:

Starting from the bottom up, by bringing frontline teams together and aligning them with general practices and their registered populations.

A large measure of continuity of senior leaders and, until recently, much greater organisational stability than in the rest of England.

Improvement has resulted mainly from the leadership of providers of health and adult social care services, with commissioners having a lesser role.

A drive towards greater marketization of services, with its corresponding increased fragmentation of services and staff churn, seem likely to substantially hinder, if not altogether preclude, attempts to integrate services along the lines of the Torbay model. (This factor is mirrored in the findings of the Nuffield Trust research, cited above, which similarly suggests the need for labour intensive long term relationship building between stakeholders in order to develop good LTC services).

Another example of successful, integrated care services is the Pennine MSK Partnership,15 characterised by a single prime vendor holding one contract for all services within a specific pathway (in this case, MSK services).

The implications of an ageing population for the prevalence and type of long term conditions, together with evidence about the extent to which existing services will have the capacity to meet future demand

Whilst it would be inaccurate to consider arthritis a disease solely of the elderly, approximately half of the elderly population have arthritis. Expenditure on MSK conditions in general is increasing, in part as a result of an aging population: MSK spending has increased by 51.6% in the last six years, and is now the fourth-highest area of NHS spending.16

There is mounting evidence of services for arthritis being restricted due to budgetary squeezes: people with arthritis already frequently report to us difficulty getting access to essential and timely services, eg assessment by specialist clinicians, physiotherapy. There are numerous reports of rationing of hip and knee surgery throughout the NHS, most recently from the Audit Commission.17 Given the projected increase in LTCs, it is difficult to see how existing services, frequently failing as they already are, could possibly in their current state with the projected increase in need.

The extent to which patients are being offered personalised services (including evidence of their contribution to better outcomes)

See the section on co-morbidities, above.

Additional Comments

A LTC strategy needs to make clear links with helping people with LTCs retain and return to work. The link between health and work has been increasingly recognised, particularly since Dame Carol Black’s 2008 Review.18 Arthritis and related conditions are the second most common cause of days off work.19 With government funding, Arthritis Care has worked with stakeholders to produce an online work retention toolkit for people with long-term fluctuating conditions and their employers.20 The strategy could reference this resource, and seek to build on it.

13 May 2013