Agenda and briefing for joint APPG meeting, November 21st 2011
Title of the event: Fluctuating conditions and welfare reform. A joint meeting held by the APPGs for MS, Parkinson’s, ME/CFS and HIV.
Date: Monday November 21st
Time: 5-6pm
Location: Grand Committee Room, Westminster Hall
Chair: Catherine McKinnell MP, Chair of the APGP for MS
Agenda:
5pm: Introduction and welcome: Catherine McKinnell MP, Chair of the APPG for MS (5 mins)

5.05pm Setting the scene: the impact of the welfare reform agenda on those with fluctuating conditions and overview of the work of the Harrington fluctuating condition review group: Simon Gillespie, Chair of the Harrington fluctuating condition review group and Chief Executive of the MS Society (10 mins)
5.15pm: A personal account of living with a fluctuating condition from the perspective of a person with MS: Shana Pezaro (5 mins)
5.20pm: The policy context: the importance of getting the policy right for people with fluctuating conditions: Dame Anne Begg MP, Chair of the Work and Pensions Select Committee (10 mins)
5.30: Q&A to members of the panel (20 mins). Please note Mark Wilson of the Harrington Independent Review Team will also be present to answer questions.
5.50pm: Summary of future actions and close, Catherine McKinnell MP (10 mins)


What do we mean by ‘fluctuating conditions’?
A fluctuating condition can be defined as any chronic condition - physical or mental - where a characteristic feature is significant variation in the overall pattern of ill health and/or disability.
A person with a fluctuating condition may experience variations in the type and severity of their symptoms. Conditions can fluctuate over the course of the day, on a day to day basis ("good days and bad days"), a week to week basis, or could be much longer term. For example, people with relapsing remitting multiple sclerosis can have relapses that last for several weeks or months, and remission can last for many months or years – but the same individual could also face daily fluctuations in their symptoms and general health.
The difficulties faced by people with fluctuating conditions

Aside from the physical and mental challenges associated with living with a fluctuating condition, people with these kinds of disabilities often face particular problems with regard to finance and assessments for the benefits they are entitled to. Dramatic increases in cost as a result of sudden deterioration or relapse can be very difficult to manage, and even more difficult to plan for. Meanwhile, assessment processes that fail to take into account the fluctuating nature of a person’s condition can wrongly deny them the financial support they need – either to manage the costs of their condition, or to replace lost income as their condition forces them to reduce their hours of work or leave employment.
How welfare reform impacts on people with fluctuating conditions
The current benefits system does not adequately recognise and support the needs of people with fluctuating conditions. It is clear that the current assessment for Employment and Support Allowance needs to be improved for people with fluctuating conditions. Changes in the Welfare Reform Bill, such as bringing in a face-to-face assessment for the new Personal Independence Payment, and placing a time-limit on contributory Employment and Support Allowance, mean that it is more important than ever to ensure that the welfare system works for people with fluctuating conditions. Our key concerns include:
Employment and Support Allowance
The Work Capability Assessment
Employment and Support Allowance (ESA) is the new benefit for people who cannot work, or have a ‘limited capability for work’ due to illness or disability. We believe that the current test for this benefit, the Work Capability Assessment (WCA) is flawed, and is wrongly finding too many people with fluctuating conditions ‘fit to work’.
In a recent DWP survey of ESA claimants, 53% of respondents were found to have a fluctuating condition. Yet, as recognised in the independent Harrington review of the WCA, significant problems arise for this group of people during the assessment process for the benefit. The snapshot nature of the assessment often focuses on the ‘here and now’ and fails to take the fluctuating nature of peoples’ illnesses into account, and the existing criteria do not adequately take into account factors such as pain, fatigue, stress, as well as the repeatability of functional activities, and the cumulative impact of multiple impairments.
Problems with the assessment process are resulting in high rates of costly appeals: 40% of people who appeal against an ESA decision win.
Time-limiting contributory Employment and Support Allowance for those in the Work Related Activity Group
The Welfare Reform Bill currently introduces a time limit of one year for those on contributory ESA (on the basis of their National Insurance payments) in the Work Related Activity Group (WRAG – those judged as having ‘limited capability for work’, but who are expected to be able to move back towards the workplace at some point in the future).
We believe that this time limit is arbitrary and unfair, particularly for those with fluctuating conditions, for the following reasons:
It would add huge amounts of stress and pressure on those placed in the WRAG to try to find employment, although many face significant barriers to work that mean that finding a job within a year is not a realistic prospect. Variation in health is itself often one of the main barriers people living with fluctuating conditions will have in finding and retaining employment.
Under the current proposal, time in the WRAG aggregates. So those with fluctuating conditions who move between the WRAG and the Support Group may find that if they return to the WRAG, they could have an even shorter time period in which to attempt to find a job before their benefit is cut.
Personal Independence Payment
The approach to reform
Personal Independence Payment (PIP) is the new benefit replacing Disability Living Allowance. We are particularly concerned at the overall objective of a ‘reduction target’ of 20% in future spending as set out in the June Budget 2010. A new focus on ‘those with the greatest needs’ risks leaving high numbers of people with fluctuating conditions without the support they need as eligibility for the benefit is tightened.
A new face-to-face assessment
The Government is proposing to introduce a new face-to-face assessment for the benefit. The draft assessment criteria published earlier this year appeared to have an extremely narrow focus, and would not fully capture the barriers that people with fluctuating conditions face in living independently. Given the experience with the WCA, we are concerned that lessons must be learnt to ensure that people with fluctuating conditions are not disadvantaged by the new assessment.
What is being done?
A group of organisations including the MS Society, NAT (National AIDS Trust), Parkinson’s UK, Arthritis Care, Forward ME Group and Crohn’s and Colitis UK, have been working together to produce recommendations to refine the WCA descriptors for people with fluctuating conditions, as part of Professor Harrington’s 2nd year review of the WCA. We would like to see these recommendations implemented by the DWP.
The Disability Benefits Consortium, a group of more than 50 organisations committed to working towards a fairer benefits system for disabled people, are working with parliamentarians and policy-makers around the Welfare Reform Bill and related regulations, in particular to:
Challenge the time-limit on contributory ESA
Ensure that no-one is put through unnecessary face-to-face assessments for PIP
Develop a set of assessment criteria for PIP that properly recognise fluctuating conditions
What Parliamentarians can do to help
Write to the DWP and ask if they intend to implement the recommendations of the 2nd year Harrington Review of ESA, including the proposals to revise the WCA for people with fluctuating conditions.
Oppose the proposals to time-limit contributory ESA to one year.
Support amendments to the Welfare Reform Bill to make it fairer for people with fluctuating conditions.