‘Improving Lives: The Work, Health and Disability Green Paper’: What does it mean for people with RA and Adult JIA?

Tell us your views

You may be aware that a few weeks ago, the government launched a ‘green paper’ on the topic of work and health. This is a top issue for people with rheumatoid arthritis (RA) or adult juvenile idiopathic arthritis (JIA). The National Rheumatoid Arthritis Society would like to help you feed in your views to the major government consultation. Read more to find out about the process, the contents of this green paper, how you can get involved and what we will be doing as an organisation.

So, what is a Green Paper?

A green paper is a report from government with very early stage proposals and ideas on a topic intended to provoke discussion. The government seeks to consult with members of parliament, relevant organisations and with the public.At the end of the consultation process, the government may decide to produce a ‘white paper’ which when presented to parliament begins the process of creating or altering laws. New laws are not the only way government can make a difference and so a white paper is not always the obvious next step.

What is this Green Paper about?

‘Improving Lives: The Work, Health and Disability Green Paper’ is a report on the state of play for people with disabilities and long term health conditions who are either in work or want to be. The consultation seeks to find an answer to the question: ‘What will it take to transform the employment prospects of disabled people and people with long-term health conditions?’. We’ll expand on the detail shortly.

Why is the government consulting on this topic now?

One of the commitments in the Conservative party manifesto for the 2015 General Election was to ‘halve the disability employment gap’. At present (there are fewer than 5 in 10 disabled people in employment compared with 8 in 10 non-disabled people and at the current rate of progress it will take 200 years to halve the gap. This isn’t about making people who are unable to work ‘get on their bike’, it’s finding ways to support people who are disabled or living with a long-term health condition, who are both able and wanting to work, to do so.

The government is keen to emphasise that this is not about more cost savings, it is about new solutions. It is easy to be sceptical after several major reforms to disability benefits in recent years but then Secretary of State for Work and Pensions, Stephen Crabb MP, categorically ruled out further cuts earlier this year and this was reiterated by his successor, Damien Green MP. It is our view that to make progress for everyone in our community we should give government the benefit of doubt and work with them. The weight of views from a broad consultation response will be far harder to dismiss and the more that come from people with RA and JIA the better.

How has NRAS been involved in this Green Paper so far?

NRAS and many others involved in healthcare have long argued that a joined-up approach whereby work is understood to be a health outcome is the only way forward, indeed we argued this when we met with the Prime Minister and the then Secretary of State for Work and Pensions, Stephen Crabb, in June this year. As long ago as 2004 in our survey of members entitled ‘Beyond the Pain’ it was clear from our members’ responses to the survey that those with RA who were in work had significantly lower incidence of depression than those out of work and the majority felt that having a job helped them to cope with their RA.

This green paper comes from the Joint Work and Health Unit, a cross-government team reporting to both the Department for Work and Pensions and the Department for Health. You may be aware that earlier this year, our Chief Executive, Ailsa Bosworth, was appointed to the Joint Work and Health Unit’s Expert Advisory Group and has given us a direct opportunity to feed in on behalf of people with RA/JIA for several months now. We are delighted that the first case study in the document, in Chapter 1, focuses on Susannah Everington, an NRAS Member who shared with us her story of living with RA and working. Ensuring decision makers think of RA and adult JIA when considering the impact of long-term health conditions on work is a coup for everyone who lives with this invisible and poorly understood disease.

What issues does the Green Paper explore?

The Green Paper is wide-ranging and has six chapters:

  1. Tackling a significant inequality: This chapter explains the link between work and health and shows the depth of research carried out by the government. The government tells us that there is an annual loss the UK economy of £100billion and this is just one of the reasons they want to tackle the ‘injustice of the disability employment gap’. There is a fantastic case study from NRAS member, Susannah Everington.

  1. Supporting people into work: Here the government explains the ways in which existing staff in local communities, primarily based in job-centres will take on enhanced roles more focussed on supporting people back in to work than penalising them.

  2. Assessments for benefits for people with health conditions: This chapter particularly focuses on changes to the Work Capability Assessment (WCA) and the need to share information across government and assessment providers to avoid needless duplication for the real people stuck in the system.

  3. Supporting employers to recruit with confidence and create healthy workplaces: Big employers have been very influential to government thinking on the Green Paper. The government has looked at best practice and seeks to share ideas and asks for more on what employers can and do already without the need for new laws. The government pledges to expand the ‘Disability Confident’ employers scheme.

  4. Supporting employment through health and high quality care for all: This Green Paper is unusual in that it has been put together by two government departments, the Departments for Work and Pensions and for Health. This is the main section on how the health service can play a bigger role in improving work outcomes for patients.
  1. Building a movement for change: taking action together: The government does not want this report to sit on the shelf. It is genuinely and rigorously consulting. This chapter outlines plans for the next two years, the remainder of this parliament, and then beyond for this to be a living document for the next decade.

To summarise a very broad document concisely is not easy but to our reading the fundamental message is the need to modernise our understanding of ‘being unwell’ and what that means in the workplace. It is recognised that one of the biggest challenges at present is the black and white system of people being either fit or unfit for work with no grey area in-between. It is widely believed that this system is inappropriate for many in the modern workplace and that is has a detrimental impact on the lives of people with long-term health conditions.

What is of particular relevance for people with RA and adult JIA?

Rather unusually (and it is most welcome), you can find the words ‘arthritis’ and musculoskeletal conditions’ quite frequently in this document. This is testament to the push from NRAS and other organisations in our sector on this topic for many years. Chapter 5 focuses on the benefits of high quality care on the prospects of staying in work and includes a section specifically on musculoskeletal conditions.

The paper notes that ‘only 12% of people with musculoskeletal conditions had a care plan’ and that having a good care plan can enable self-management and prevent further deterioration of your condition. This is something NRAS has previous recognised as part of the Fit for Work Coalition and in partnership with other member organisations we have created My Plan for life with…, a care planner for people with various MSK conditions. You can find it on our website: http://www.nras.org.uk/publications/my-plan-for-life

The paper also says that the government is interested in supporting new, innovative, ways of providing MSK care and better recording data on the outcomes of people with MSK conditions.

There are two consultation questions aimed directly at people with musculoskeletal conditions:

  • How should access to services, assessment, treatment and employment support change for people with mental health or musculoskeletal conditions so that their health and employment needs are met in the best possible way?
  • How can we help individuals to easily find information about the mental health and musculoskeletal services they can access?

What does NRAS think has been missed out?

NRAS welcomes the focus on supporting people to get in to work but would have liked to see more about supporting people who are already in work. We know that the majority of people leave the workplace within six months of diagnosis and that most never return.

You may remember that in the Welfare and Work Reform Bill approved by parliament in Spring 2016, parliament voted for a £30 a week cut for some people claiming the Employment & Support Allowance (ESA). We know that many MPs regret voting the way they did and only did so on the promise from government whips that there would be additional support provided when this long promised green paper came around. Whilst the green paper looks at changes to the Work Capability Assessment (WCA) which decides who is eligible to ESA and to which components, there is no reversal for the financial loss to thousands.

Our experience tells us that whilst Disability Living Allowance (DLA) and its successor benefit, the Personal Independence Payment (PIP) are intended to ‘meet the additional costs of living with a disability or a long-term health condition’, many people with RA and JIA rely on them to stay in work. Those who receive the higher rate of the mobility component and subsequently put this towards a Motability vehicle often rely on that vehicle to get to and from work and would otherwise be unable to work. We feel there was a missed opportunity to explore this further in the green paper.

How can share my views?

The government consultation is open until 17th February 2017. You can respond directly to the government consultation here.

The main government consultation is very detailed and is split into 48 different questions, not all of which are relevant to people with RA/JIA. We are encouraging you to fill in the (much more streamlined) NRAS survey. We will pass the raw answers to the government but this will also allow us to identify trends in our community and inform our response. You can find the NRAS survey here.

NRAS will be hosting two focus groups on this topic to further our understanding of the views of people with RA and JIA. These will be in Leeds (Saturday 14th January) and Birmingham (Saturday 21st January). More information will be sent to contacts in these areas or you can contact Sarah Venables (sarah@nras.org.uk / 01628 823524).

If you would like to read the Green Paper in full, you can find it here.

What will NRAS be doing next?

NRAS will be facilitating the focus groups and survey mentioned above, all of which will help to form our response on behalf of all living with RA and JIA. We will submit a response to the government before the deadline of 17th February 2017. We will also be exploring ways to take on board the views of employers and to include this in our response to ensure it is as balanced as possible.

Through continuing membership of the Joint Work and Health Unit’s Expert Advisory Group we will also have a role to play in reviewing the next steps once this consultation process has closed.