Writing Fit

This week I will be in Israel, having meetings and conducting interviews with national experts and public policy officials. Among those I’ll be meeting will be Prof. Tishler, Chair of the Israeli Rheumatology Physicians Union, Ron Wisinger- of the Israel Institute for Occupational Safety and Hygiene, Nachum Izkovich, CEO of the Ministry of Social Affairs, Vered Swid, Chief Advisor to the Prime Minister on Social and Welfare Affairs and Elliot Rosenberg, Head of the Department of Occupational Health in the Ministry of Health. I’ll also be catching up with my old friends Michael Yakuel and Ofra Balaban of Inbar – the Patient’s organisation.

As we finalise the Israeli Fit for Work? report, this visit will allow me to add to our understanding of the labour market status of people with MSDs and the support available to them as they try to live fulfilling working lives. I’m expecting to learn a lot.

Last week I attended two important events which focused on inflammatory conditions. The first was on Monday in London and was a conference organised by the National Audit Office (NAO) – an independent organisation which reports to the British Parliament on the effectiveness with which public money is being spent.

Earlier this year the NAO produced an influential report examining the quality of services for people with Rheumatoid Arthritis (RA). I was a member of the Advisory Group for the project, along with other friends of the Fit for Work? project such as Professor Paul Emery and Neil Betteridge of EULAR, and Ailsa Bosworth of the National Rheumatoid Arthritis Society (NRAS). Dame Carol Black, National Director for Health and Work, and herself a Rheumatologist, presented persuasively on the need to keep ‘work’ at the centre of the debate. I spoke on a panel discussion during the conference and emphasised the need to optimise early diagnosis and treatment – not just for clinical reasons – but to give people with Rheumatoid Arthritis the best chance of staying in and returning to work.

The second event was in Madrid on Wednesday evening and it focused on recent research (called Salud y Trabajo) conducted on the impact of inflammatory conditions on work disability in Spain conducted by TAISS and led by Pablo Lazaro. The event also featured two short films, made by independent film-makers, which told the compelling stories of two people recently diagnosed with Rheumatoid Arthritis and Ankylosing Spondylitis respectively. One of the aims of the event was to inform members of the audience about the impact of these conditions on both everyday functioning and on personal relationships. I hope to make these films available on the Fit for Work? website very soon.

Today I attended the first full meeting of the RMSD Interest Group in the European Parliament in Brussels. This group, initiated by EULAR, and chaired by Mrs Edite Estrela MEP (Portugal) was launched on World Arthritis Day in October this year. One of its aims is to raise the profile of Rheumatic conditions and MSDs in the Parliament and in the Commission and to help position EULAR as the authoritative source of clinical and patient voice.

The Group has a number of MEPs as members, including Jim Higgins (Ireland), Antoniya Parvanova (Bulgaria) and Marije Cornelissen (Netherlands). Senior figures from EULAR and EULAR-PARE represented included Professor Paul Emery, Professor Josef Smolen and Neil Betteridge.

The Group was addressed by Dr Gigorij Kogan, Scientific Officer from DG Research and a specialist in chronic disease. He described some of the research into rheumatic diseases and MSDs which the EU had funded during recent years and explained how research priorities were decided. The Group discussed whether rheumatic and musculoskeletal diseases were receiving enough priority given their prevalence and their economic and social impact.

The next meeting of the Group will be in March 2010 when the topic for discussion will be ‘Work’. The Fit for Work programme has been asked to provide input to this meeting and we will be working with EULAR to ensure that the content is both informative and provocative!

I attended a lunchtime Roundtable event yesterday organised by the European Policy Centre  here in Brussels. The speaker was Dr Martin Terberger, Head of Unit for Pharmaceuticals at DG Enterprise and Industry. While the focus of the discussion was the so-called ‘Pharma Package’ a set of EU proposals to deliver safe, innovative and accessible medicines, I was able to ask Dr Terberger a question about the impact which differences in Health Technology Assessment (HTA) helped or hindered accessibility, especially if one outcome was to support the labour market participation of people with long-term or chronic conditions (eg some MSDs).

He was careful to avoid using the term ‘harmonisation’ but felt that, on the science, there was more room for ‘convergence’ around the clinical evidence. He warned, however, that HTA must take care not to widen health inequalities by treating more economically ‘useful’ patients differently from, for example, elderly patients just because of differences in their productive capacity.

On Tuesday, Dame Carol Black and I participated in a Roundtable event in the House of Commons – the seat of the British Government.  This was a well attended, lively event and I was given the opportunity to make the following speech about the Fit for Work programme:

“For last 18 months The Work Foundation has been conducting research across 23 countries examining the impact of MSDs – including Inflammatory Diseases – on labour market participation. Rheumatoid Arthritis (RA) was one of the conditions we examined in detail because we know that levels of work disability and withdrawal from the labour market are high among people with RA – up to 40% within 5 years of diagnosis.

We’ve been looking at the direct and indirect costs of sickness absence from work and of permanent work incapacity attributable to RA. We have also looked at the interventions which Governments, clinicians and employers can take which can keep people with RA attached to the labour market and help them lead fulfilling working lives and make their contribution to a productive economy.

We launched our report in Brussels two weeks ago and we are trying to influence both National Governments and the European Commission to support steps which maximise the Labour Market participation of people with RA. We are doing some of this Advocacy work in collaboration with EULAR.

A key issue (one of many) is that current employment legislation in EU does not recognise MSDs which are not caused by work. Manual handling (CLBP) and Display screen equipment (WRULDs) are in scope – but the duty of care to support those with pre-existing conditions – such as RA – where poor working conditions can make these conditions worse, is currently out of scope.

Good Work is good for health: this includes control over tasks, control over pace & time; manageable physical work demands & an ergonomically suitable working environment; flexibility of working time.

We must reverse the focus of policy & practice from Incapacity to Capacity – the UK ‘fit note’ idea is intended to reinforce this message.

People with MSDs – including RA – can also experience periods of depression or anxiety which can complicate the process of returning to work. Policy-makers, clinicians & employers need to build this into the way they manage job retention & return to work (RTW).

Up to 30% of people with RA avoid disclosing their condition to their employer or colleagues – part of the self-stigma experienced by many.

Early Interventions can be critical, for example:

• Accurate & early diagnosis
• Early access to treatments and therapies – especially if early symptoms can be arrested and remission achieved
• NAO data shows that early treatment brings economic & productivity benefits
• TWF shows that early intervention can prolong careers and delay premature withdrawal from the labour market and that there is an economic ‘premium’ to early intervention.

There is considerable political focus on incapacity in the UK at the moment, especially as we are seeking to reduce public expenditure. However, as long as the debate has a punitive tone and is dominated by speeches and newspaper articles which focus on getting the feckless & ‘workshy’ off benefits and back into work, we are going to struggle to address the far more serious issue of how we avoid people with long-term and chronic health conditions becoming detached from the labour market until way after this recession is over.

During the Fit for Work study I’ve met hundreds of people with RA and other inflammatory conditions. None have been feckless or ‘workshy’. Most have been energetic, passionate, proud, determined, analytical, resourceful and dignified. I have been privileged & humbled to work with them & I am all too aware of the talent that goes to waste if people like this are lost to the world of work.”