Welfare Reform Bill

Baroness Gale Excerpts

Tuesday 13th September 2011 Lords Chamber

[Baroness Gale]

My Lords, I will be focusing my speech on the impact that the provisions of the Bill will have on people with Parkinson's and their carers. I declare an interest as chair of the All-Party Parliamentary Group on Parkinson’s Disease. My concerns are that the Government’s reforms could mean that people of working age with Parkinson's will miss out on the financial support on which they now rely. Nearly 10,000 people of working age with Parkinson’s receive disability living allowance and a Parkinson’s UK survey of 2010 found that the DLA was used by people with Parkinson’s for absolute essentials. For example, it pays for the extra cost of electricity for heating the home, for support and help in the home and for transport costs. They describe it as a lifeline.

The Government propose to replace the DLA with a new benefit for those of working age, the personal independence payment. The focus of PIP will be on those with greatest need. That includes moving from the existing three DLA care rates to only two and it is possible to surmise that people with Parkinson’s on the lower DLA rate are more likely to lose out completely. Will the Minister give an assurance that no one with Parkinson’s who currently receives the DLA will lose their benefit and that the important benefits to which the DLA is linked, such as the blue badge or the mobility scheme, will now be linked to the PIP?

This is not the only way in which the reforms will impact on those with Parkinson’s. By wanting to reassess everyone of working age who receives the DLA and then reassess people routinely, rather than make indefinite or long-term awards, the Bill clearly fails to recognise the nature of a progressive, fluctuating condition such as Parkinson’s. Most people with Parkinson's are already on indefinite awards of the DLA and that is in recognition that their symptoms will not improve. To put them through a face-to-face reassessment and periodic reviews will cause anxiety and distress. As someone with Parkinson’s put it, “This is a recipe for continual harassment”. Will the Minister assure your Lordships' House that people with Parkinson’s will not be put through the anxiety of face-to-face reassessments if sufficient written evidence already exists and that, once in receipt of PIP, anyone with Parkinson’s already receiving the highest rate of PIP should not be subject to periodic retesting? Face-to-face reassessments are notoriously inaccurate for people with fluctuating conditions. People report that the assessor sees them on a good day and assumes that that is how they are all the time. Under the new proposals, assessors will not take into account life-limiting symptoms of Parkinson's, such as problems with getting out of bed, moving around indoors, the risk of falls, and night-time care.

There is much concern about the need to report changes in circumstances for a fluctuating condition such as Parkinson's. People are extremely worried about these proposals. Recently, one man wrote:

“Don't let the government take DLA away; it’s too good a benefit to lose, and a lifeline for disabled people. DLA can continue to be improved, and refined to meet any requirement. Just don't let them take it away, or abolish it, just because they couldn’t save enough money by keeping it”.

He ended by signing his name and underneath wrote:

“Severely disabled for 20 years and terrified”.

During the Summer Recess, I had the privilege of shadowing a Parkinson’s nurse in Bridgend for a day. She really impressed me. She was so dedicated and it was easy to see that she loved the work she does. I asked her whether patients had said anything about the Welfare Reform Bill and the DLA. Her answer was that they are petrified. A briefing I received recently—like other noble Lords I have received many briefings on this Bill—ended by saying:

“The situation for the sick and disabled in this country is pretty dire”.

People with Parkinson's are incensed about how people receiving benefits, such as the DLA, are being portrayed in the media, yet are fearful of being reported as frauds just because they have had a good day. One man said:

“I am sick to death of the Government, certain UK newspapers, et al ‘informing’ the nation that ‘there are so many lazy people who are not ill’. I have been called a ‘fraud’ just because I have had a good day. Anyone who is jealous of me, or thinks I am lazy, can have my DLA, as long as they take the Parkinson’s with it. I have worked all my life. I have paid into the system for an insurance I hoped I would never need—but unfortunately I do. I wish perhaps that people would just think about that”.

I hope that the Minister will think about that tonight.

What sort of coalition Government is this that people in this country are petrified and terrified of these proposals? I have never heard anyone speak this way about any government proposals or about any Government. People might be unhappy or they might not like something but on this people are saying that they are petrified and terrified. Something must be wrong for people to feel this way. I hope that the Minister will reflect on what people with disabilities such as Parkinson’s are saying as it is a progressive illness for which there is no known cure. People do not recover from Parkinson’s.

As their illness progresses, people with Parkinson’s generally have carers. Often it is a family member or friend. Informal carers stand to face a double whammy under this Bill as a carer's allowance is dependent on the person with Parkinson’s being eligible for the higher or middle rate of the DLA. The Government have done little to make the situation any clearer for carers about which rate of PIP might be linked to the carer’s allowance. Can the Minister give an assurance to carers that both new rates of daily living PIP will lead to eligibility for carer’s allowance so that no carer will lose out in the change from the DLA to the PIP? Please give them some hope so that they can continue with their caring responsibilities without all these unnecessary worries.