8 June 2011
Action for M.E. has responded individually, as a charity and jointly, as a member of the Disability Benefits Consortium, to the initial draft of assessment regulations relating to the Personal Independence Payment (PIP), the welfare benefit which is due to replace Disability Living Allowance (DLA) for working-age disabled people from 2013/14.
Individual response
Action for M.E.’s response reflected some of the points made by Policy Officer Tristana Rodriguez in her recent meeting with Dr James Bolton, Deputy Director, Health Work and Well-being Directorate, Department for Work and Pensions (DWP).
It stated the need for:
- greater understanding of 'fluctuation' in the document eg. understanding of sustainability, and 'pay back' or post-exertional malaise
- consideration of quality of life factors, such as social engagement and leisure activities, in the assessment
- specific mention of M.E. in areas which permit examples, eg. technical notes, given poor awareness within the DWP and Atos
- consideration of complementary therapies and supplements as well as conventional medication and treatment, as there is no standardised treatment that works for all people with M.E.
- measurement of cooking assessments against a “labour intensive cooked meal made from fresh ingredients” as it was for DLA
- taking account of any significant level of psychological distress which impedes planning and preparing a journey, not just those cases where this distress is “overwhelming”
- demonstrate better understanding of the problems experienced by people with M.E. such as the impact of fatigue, word finding difficulties and brain fog, and other neurological symptoms.
Joint response
Action for M.E. also contributed to the Disability Benefits Consortium’s response which calls for full and proper Parliamentary scrutiny of the plans for the new PIP assessment, as well as outlining broad concerns among the charity’s 50+ member organisations.
On fluctuating conditions, it says: “There is nothing in the criteria (or in the regulations) that would act as a prompt to ensure that individuals must be able to undertake an activity repeatedly, reliably and safely, despite this being mentioned in the accompanying information.”
Examples of the problems disabled people face include two quotes from people with M.E., put forward by Action for M.E., who say: “I really struggle to keep my home tidy and I discourage people from visiting because I get upset about the mess which means I end up more isolated” and “I have special dietary needs and need supplements that help to manage the illness but are not available on the NHS. Also, treatments such as osteopaths, chiropractors and other therapies that alleviate pain and other symptoms but have to be paid for privately.”
