This summit was sponsored by Abbott Laboratories.

The views expressed in this document do not necessarily reflect those of Abbott Laboratories. The Work Foundation Inflammatory Arthritis Expert Summit 29 November 2011 National Assembly for Wales

Background The Work Foundation Inflammatory Arthritis (IA) Expert Summit was held courtesy of Mick Antoniw AM at the National Assembly for Wales on 29 November 2011. Inflammatory arthritis is the term used to describe a range of autoimmune conditions, in which the bodys immune system attacks the joints and causes them to become inflamed. Rheumatoid arthritis (RA) is one of these conditions, affecting 580,000 people in England, and was used as the summits discussion condition. The Summit, sponsored by Abbott, was called to enable experts from the NHS, patient groups and politicians to discuss what levers can be used to increase prioritisation of appropriate treatments and care for arthritis patients in order to achieve good health and functional outcomes, such as a persons ability to work; and to ensure that the NHS structures suitably account for, and prioritise services for, people with inflammatory arthritis. The objective of the summit was to provide practical, focused recommendations, endorsed by the attending experts, for policy makers and implementers, including commissioners, so that IA patients are provided with appropriate care, service provision and treatment to ensure they can experience optimal outcomes, including returning to or remaining in the workplace as a functional outcome. The Work Foundations Body and Soul report indicates that work, particularly good work, is good for health and good for recovery. Furthermore, being able to work is often identified by patients as a valued wider societal outcome. The recommendations, set out below, are submitted to the Welsh Assembly Government for their consideration so that in this therapeutic area, the Minister for Health and Social Services can better achieve the aim of improving world class outcomes for IA patients. The summit write up is for submission to the Welsh Governments Minister for Health and Social Services, the Chief Medical Officer, the Chief Executive of Public Health Wales and the Health Professions Health, Work and Wellbeing Co-ordinator for Wales

Summary of discussions There was consensus amongst the attendees about the lasting impacts of IA on an individual physically and mentally which often results in absence from work. The group noted the importance of preventing patients from having to stop work in the first place. The group felt that there is often a disconnect between different aspects of the health service and for this reason IA patients do no not receive the optimal multidisciplinary care they deserve. Job retention and the need to focus on what a patient can do was a theme throughout the summit. The NHS undoubtedly has a role to play in helping patients remain or return to work. Employers have a key role to play in ensuring employees with IA are given suitable adjustments for remaining in the workplace. The workplace, and the use of occupational health, is where the quickest and most cost effective form of intervention can occur.

Conclusions and recommendations It was clear that the group felt the theme of work should be focused more in the primary and secondary care setting. The design of health services should reflect this and in some cases culture needs to change in the NHS for work to be considered as a health outcome. To achieve job retention it is essential that intervention occurs early in the work place and the NHS. Assessing a patient holistically, including their psychological and social wellbeing is paramount. GP access to Allied Health Professionals (AHPs) such as occupational therapists and physiotherapists with occupational health skills was mentioned as being essential for ensuring patients are evaluated appropriately in order to remain in the workplace. Integrating these services into primary care is important for ensuring effective early intervention. Enabling NHS consultation with an IA patients employer should be made easier because too often there is a lack of dialogue between both parties. The employer has a significant role in ensuring that patients can remain in the work place despite having IA. By focusing on what a patient can do, employers can keep their employees in the work place. There should be improved access to occupational health physiotherapy and occupational therapy -this can potentially be included in the Corporate Health Standard or through development of a work charter. Employers must provide flexibility so that employees can access support and treatment they require. There must be more education throughout the health service of the potential impact of MSDs on the patient and their working life. The professional bodies and royal colleges can play a role in broadening the awareness of how to care for and treat IA patients so that work is focused on as a health outcome. 2

We need to closely examine the cost relationships between agencies that pay someone when they are ill and the cost benefits of prevention and returning to work. Analysis is required to create an interventionist change.

Priority Actions 1. A Welsh musculoskeletal framework should be developed to ensure patients with IA receive optimal multidisciplinary care and support throughout the NHS pathway. It is essential that a musculoskeletal framework focuses on work as an outcome of a patients pathway and that interaction with employers is brought to the fore. 2. The Welsh Government should quickly evaluate and roll out the AHP Work Capability pilots. Such pilots have the potential to offer GPs appropriate support in the OH (Occupational Health) setting, therefore reinforcing the aspect of a patients working life in primary care.

The Work Foundation Inflammatory Arthritis Expert Summit 29 November 2011 Welsh Assembly Summit attendees: Steve Bevan (Chair) - Director, Centre for Workforce Effectiveness, The Work Foundation Mick Antoniw AM (Sponsor) - Assembly Member, NAW Health and Social Care Committee Paul Morris - Health Researcher, NAW Welsh Conservative Party Group Pip Ford - Chartered Society of Physiotherapy: Policy Officer for Wales James Rind - Occupational Health Physiotherapist - Workstrong John Pearse - Chairman, Arthritis Care Victoria Kalmaru- Information Services Manager, Arthritis Care Ruth Crowder College of Occupational Therapists: Policy Officer Wales Glenys Morgan - Rheumatology Clinical Nurse Manager Professor Ernest Choy- Rheumatologist at Cardiff and Vale University Health Board Brendan Dobrowolny - Abbott Amy Hefford Abbott

Impact of RA The group explored the impact of musculoskeletal diseases (MSDs) of which IA is one, on a persons working life. It was specifically noted that MSDs are the second biggest cause of work related absence but that often patients do not come forward to their employers. Indeed, the Chair noted that it can often be ten months following condition onset that intervention occurs. Discussion examined the potential psychological implications of having IA. It was recognised that if someone develops IA and falls out of the workplace, the likelihood of developing a psychological condition increases dramatically - 25 per cent of people with RA develop depression.

The political framework The group were in agreement that Healthy Working Lives needs to have substantial teeth and long term political commitment to implementation. The Boorman review was praised but it was noted that an equivalent was needed in Wales to demonstrate the value of pushing work up the health agenda. 4

It was indicated that sometimes government agencies and departments tend to think in silos but often intervention in one area can lead to saving in another. The 2009 National Audit Report Services for People with Rheumatoid Arthritis was referenced as disclosing this. The Chair mentioned that, despite pressure from the Fit for Work Europe Coalition, the European Directive on MSDs does not include reference to the bio-psycho -social model. It was also mentioned that the role of Dame Carol Black, National Director for Health and Work, is ending this year. While the UK pioneered much of the Health and Work collateral, the removal of Dame Carols role would be a significant step backwards. The Chair noted that 3 per cent across the EU and 8 per cent in UK was spent on preventative interventions and a difficulty was that this has a payback beyond the electoral cycle

Prevention, assessment and early intervention The group acknowledged that the most likely time to feel the impact of RA is in a persons 50s, and this means there should be even more importance to focus on job retention. The group indicated that a holistic bio-pycho-social assessment of patients should be undertaken so that all implications of having IA can be accommodated. The group discussed the cost benefit advantages of intervening early for patients with IA and that evidence for this needs to be showcased. The Chair mentioned the evidence for treating RA with biologics when its appropriate to do so and the positive impact this can have on a persons ability to work. One of the attendees mentioned that a pilot was needed in Wales that would showcase the cost benefits of intervening and treating IA patients early. The Allied Health Professional (AHP) Capability Assessment pilot was brought up in conversation. Giving this resource and educational material to GPs could have significant potential for encouraging earlier and suitable referral to allied health professions such as physiotherapists and occupational therapists and result in more informed assessment of fitness to work and support needed. If the assessment of these pilots is favourable, the Government should look to roll out across Wales. De-medicalising exercise was noted as being an important culture change and that an activity referral scheme would be advantageous to account for social or creative activities as well as exercise.

Providing optimal care and treatment for IA patients The Chair noted that intervention is rarely joined up and that the mind set within the health service is focused on what people cant do as opposed to what can. It was mentioned that one of the biggest challenges facing clinicians and consultants is the lack of integration between primary and secondary care. It was added that this separation is in danger of getting worse due to the changing health landscape. 5

The MSD clinical pathway in Bangor was mentioned as being a good model where multidisciplinary teams and primary and secondary care work well together. It was recommended that this should be rolled out to other areas across Wales. The attendees mentioned that it can be difficult for patients to have access to allied health professions in a suitable timeframe. Improved access to physiotherapy and occupational therapy, and the option of self-referral, was referenced as being essential to those with RA. The group felt that GPs should speak to patients as a person rather than purely about the condition. Asking about a patients job in relation to their condition was given as an example. It was felt that the Fit Note had not been well received in Wales. It was stressed that much can be done to help educate patients about achieving remission and that the natural instinct of patients is to take a minimum amount of medication. The attending consultant added that once treatment has started, this needs to be closely monitored and reviewed to ensure targeted patient outcomes are achieved. It was indicated that in some circumstances the centralisation of specialist medical services can be beneficial because it ensures expertise. Specialist nurses were praised as being the unsung heroes in helping IA patients achieve optimal care. Increasing the number of IA specialist nurses could make a significant difference for patient outcomes.

The role of the employers, patients and the need for joined up services The attendees mentioned examples of good practice in the workplace undertaken by BT and the Royal Mail. It was reiterated that managers in the workplace need to look at what people can do rather than what they cant. Reference was made to North America, where employers will often buy in back to work services to coordinate between the employers, the NHS and social services. Patient self-referral was discussed as being slow in Wales. Referral to schemes that include social interaction was referenced as being important in counteracting the psychological implications of IA. This was referred to as a social prescription providing the opportunity for social or creative activity as well as exercise. There was consensus that more work is needed to educate employers about the potential cost of not dealing with IA in the workplace. The recognition of presenteeism was also mentioned, in particular a CSP survey showing that a third of staff dont report feeling pain and a quarter of those unwell go to work. The benefit to employers of ensuring their employees are well is under realised because they will have already invested a lot of money in their staff. Some of the group felt that patients should be in a position to demand more support from their employers but that 30 per cent of people with RA dont disclose it to their employers. Roll out of a work charter to define the responsibilities and right of both the employer and employee was referenced as a recommendation. 6

It was indicated that perhaps there is not the same level of condition awareness amongst IA patients as there is with other conditions such as cancer.