Joint All Party Parliamentary Group meeting on Fluctuating Conditions: minutes of the meeting on 21 November 2011

Joint All Party Parliamentary Group Meeting on Fluctuating Conditions
Grand Committee Room, Westminster
Monday 21st November 2011, 5-6pm

Parliamentarians attending
Catherine McKinnell MP; John Hemming MP; Julie Hilling MP; the Countess of Mar, Forward ME chair; Ian Swales MP; Baroness Gale; George Young MP; Stuart Andrew MP, Mary Glindon MP; Duncan Hames MP; Fiona Bruce MP; Mark Durkan MP; Annette Brooke MP; Mark Menzies MP; Stephen Lloyd MP

Apologies
Graham Morris MP; Caroline Lucas MP; Baroness Finlay; Jim Murphy MP; Lord Dubs; Pamela Nash MP; Hywel Williams MP; Sheryll Murray MP; Hugh Bayley MP; Bob Russell MP; Kerry McCarthy MP; Elfyn Llwydd MP

Other attendees
Simon Gillespie, MS Society Chief Executive; Jayne Spink, MS Society Director of Policy and Research; Laura Weir, MS Society Head of Policy and Campaigns; Lucy Bramwell, MS Society Senior Public Affairs Officer; Laurie Drake, MS Society Policy and Campaigns Researcher and Administrator; Daisy Ellis, MS Society Policy and Campaigns Officer; Asha Kaur, MS Society Policy and Campaigns Researcher; Claire Nurden, MS Society Policy and Campaigns Researcher; Andrew Barclay MP’s Researcher; Ray Stonehill, MS Society Kingston branch chair; Carole Carey, MS Society campaigner; Jeanette Wood, MS Society campaigner; Tina Walker, Parkinson’s UK Volunteer Ambassador; Brian Lymbery, Parkinson’s UK Volunteer Ambassador; Janice Kent, Forward ME Member; Bill Kent, Forward ME Member; Anne Berger, MS Society campaigner; Christine Harrison, Brame Secretary; Alison Orlandi, Crohn’s and Colitis UK, Public Affairs Officer; Sarah Shaw, Crohn’s and Colitis UK Disability Support Volunteer; Helen Terry, Crohn’s and Colitis UK UK Director of Information and Support; Hilary Sears, MS Society Chair Elect; Jessica Spry, Parliamentary Assistant to Dame Anne Begg; Gemma Hopkins, Lexington Communications Research Consultant; Lucy Eddison, Researcher to Fiona Bruce MP; Heather Alcock, APPG HIV & AIDs, Policy Adviser; Charles Shepherd, Forward ME Fluctuating Conditions Consultant GP; Sam Kent, John Thurso MP’s Researcher; Beverley Thompson, Stephen Lloyd MP’s Visitor; Kriss Payne, Annette Brooke MP’s Researcher; Tristana Rodriguez, Action for ME Policy Officer; Sarah Radcliffe, NAT Senior Policy Officer; Drew Lindon, Parkinson’s UK Parliamentary Officer

Catherine McKinnell, MP

Ms McKinnell opened the joint All-Party Parliamentary Group (APPG) meeting on how to make welfare reform fairer for those with fluctuating conditions. She explained that it was important for those formulating policy in this area to develop a deep understanding of the issues that people with long-term, fluctuating conditions face.
Ms McKinnell said that members of the Department for Work and Pensions (DWP) Ministerial Team had been invited but were unfortunately unable to attend.

Simon Gillespie, MS Society Chief Executive

Mr Gillespie stated that concerns about the Working Capability Assessment (WCA) were still alive with a news article today (21st November) highlighting the significant stresses that the appeals system was under. He explained that the WCA doesn’t work for those with fluctuating conditions, drawing attention to how descriptors did not take adequate account of the severity and frequency of symptoms. These descriptors should be multi-dimensional, he stated, and need to be refined further; the work of the Harrington Review has been welcome. He believed that decision makers should use special circumstances rules more actively and should also receive better training on fluctuating conditions. Mr Gillespie suggested that the ESA50 application form could be adjusted to provide people with the opportunity to explain how their condition impacts upon their everyday life. Finally, he hoped that the same mistakes would not be repeated with the descriptors for the new Personal Independence Payment (PIP).

Shana Pezaro, MS Society Campaigner

Ms Pezaro outlined her personal experiences of having MS, explaining how the severity and variability of symptoms such as neuropathic pain and temporary blindness made it impossible to answer questions in the WCA that require expositions of a ‘typical day’. Shana said that the WCA provides a snapshot of a condition, rather than a changing picture over time; she said that the government need to ensure that PIP works from the start and that the lessons from the WCA have been learnt.

Ms Pezaro felt that imposing a time limit of contribution based Employment and Support Allowance (ESA) was unfair as it penalised those who had paid into the system but still needed support and were not entitled to income-related ESA. Furthermore, she stated that face-to-face assessments during the course of applying for benefits were largely pointless for those with long-term, progressive conditions as they had already been through a lengthy process of diagnosis with different medical professionals.

Dame Anne Begg, MP

Dame Begg explained that the migration of people from Incapacity Benefit (IB) to ESA was happening now, adding to the importance of ensuring that the WCA adequately supported those with disabilities and long-term conditions. Drawing on a story of a constituent with Parkinson’s, she said that regular, periodic reviews of benefit awards meant that people constantly had to prove their condition to different individuals, from assessors to medical professionals. The new proposal from Dame Carol Black to use an independent assessor instead of a GP to provide fit notes would add another layer of assessment, she said.

Dame Begg stated that there often appears to be an assumption within government that people have an ill health episode and then recover, able to return to the work place. She said that the welfare benefit system and the Work Programme reinforce this attitude, ignoring the fact that people with chronic progressive conditions do not get better.
She expressed concern about the WCA as well as the time-limiting of contribution based ESA for those in the Work Related Activity Group (WRAG) but noted that the Peers were currently challenging some of these issues in the House of Lords.

Mark Lawson, Harrington Review Committee

Mr Lawson explained that he sits on the Harrington Review committee and said that it was unfortunate someone from the DWP Ministerial Team was unable to attend. He reiterated the view of Lord Harrington that while the WCA was the right concept, it was not working as well as it should do. Mr Lawson believed that the WCA was getting better and was hopeful that positive progress can be made on the descriptors. He said that the second review is being published this Thursday (24th November).

Questions from the Floor

Question: Brian
Explained that he has had Parkinson’s for 19 years and asked how we can improve public understanding of progressive conditions.
Dame Anne Begg, MP
The fact that a condition such as Parkinson’s has a wide spectrum makes this task difficult. Dame Begg said that the WCA poorly captures this variation, and also that the day-to-day variability of a condition makes forward planning difficult. The benefit system is not well designed for people with such conditions.
Simon Gillespie, MS Society Chief Executive
Mr Gillespie agreed with Anne Begg, stating that if you created the WCA descriptors now, you would not do it like this. He also said that there is a role for third sector organisations such as the MS Society to influence policy and planning at early stages.

Question: Stephen Lloyd, MP
Mr Lloyd said that it was disappointing there was not someone from government present. He believed that the Harrington Review has been a positive step and that the DWP has started to take on board issues related to fluctuating conditions. Due to the current economic climate, he cannot see lifetime awards being made. Finally, he said that if a proper package of medical evidence is submitted, then it could act as an alternative to assessments.

Question: Ray Stonehill, MS Society Kingston Branch Chair
Mr Stonehill said that ATOS Healthcare assessors seem to do the job of a GP, without the deep knowledge that they have a person’s medical condition. If we trust GPs with commissioning services, why not with providing accurate supporting evidence for benefit applicants?
Simon Gillespie, MS Society Chief Executive
Simon said that evidence has shown that the stress of appeals can make conditions worse as well as add to a person’s anxiety. He said that organisations like the MS Society want to ensure that some of our experience of feeding into the review of the WCA is taken account of in creating descriptors for PIP. He reiterated an earlier point that assessors and decision makers should be properly tuned into the needs and difficulties of those with fluctuating conditions.
Dame Anne Begg, MP
Dame Begg agreed, she said that it was of fundamental importance that the PIP descriptors do not make the same errors as the WCA.

Question: Julie Hilling, MP
Ms Hilling stated that while we know there are people who make false benefit claims, we should not punish everyone because of the behaviour of a few individuals.

Question: The Countess of Mar
The Countess of Mar said that we must ensure that the PIP descriptors are nothing like the WCA, and that the strength of feeling about this was immense. She expressed concern that ATOS Healthcare may be given the contract for carrying out face-to-face assessments.

Closing Remarks: Catherine McKinnell, MP

Ms McKinnell said that many Parliamentarians were aware of the impact of the WCA and welfare reform more generally upon the lives of those with disabilities and long-term conditions. She said that it was important to carry on the work already being undertaken, such as awareness raising and increasing public understanding, to ensure the government has the correct policies in place.