Work and Pensions Committee - Universal Credit implementation: meeting the needs of vulnerable claimantsWritten evidence submitted by the Motor Neurone Disease Association


(i)The key rationale driving Universal Credit, of assisting people back to work, does not apply to those with terminal or degenerative illnesses.

(ii)The income of some people with MND (Motor Neurone Disease) will be adversely affected by the switch to Universal Credit, most notably due to the abolition of the Severe Disability Premium.

1. Few conditions are as devastating as Motor Neurone Disease (MND). It is rapidly progressive in the majority of cases, and is always fatal. People with MND will, in varying sequences and combinations, lose the ability to speak, swallow and use their limbs; the most common cause of death is respiratory failure. Most commonly the individual will remain mentally alert as they become trapped within a failing body, although some experience dementia or cognitive change. There are about 5,000 people living with MND in the UK. Half of people with the disease die within 14 months of diagnosis. There is no cure.

2. The MND Association is the only national organisation supporting people affected by MND in England, Wales and Northern Ireland, with approximately 90 volunteer led branches and 3,000 volunteers. The MND Association’s vision is of a World free of MND. Until that time we will do everything we can to enable everyone with MND to receive the best care, achieve the highest quality of life possible and to die with dignity.

3. While we have seen no reason in principle why the new Universal Credit should not support people with MND effectively, we have become more concerned that it might fail to do so as more detail has become available. Approximately one third of people living with MND are of working age, and so likely to claim at least some elements of the new benefit.

4. This response therefore focuses on the fourth item in the Committee’s call for evidence: changes in the income entitlement of disabled people under Universal Credit, including those who may receive less income under Universal Credit than at present.

5. The underlying policy rationale of Universal Credit—to encourage people back to work—does not apply in respect of MND: once someone with MND has reached the point of having to leave work, no return will be possible. Nonetheless it has become clear that some of the details of UC will affect some people with MND negatively, relative to the current system.

6. The abolition of the Severe Disability Premium will have a serious negative impact on people with MND who do not live with any other adult. The proposed boost to benefit for those in the support group will not balance out this loss for a person who is not part of a couple. We urge that the premium be reinstated: a person with MND who has had to leave work will not be able to return, so penalising them in this way is wholly unjustified.

7. A person with MND whose partner is also disabled will find that overall the couple are penalised by about £100 a week, also due to the loss of the SDP.

8. A couple in which one partner is a pensioner and the other develops MND will also be badly hit by the changes. This is quite a common scenario: MND is more common in older people and the risk increases when someone is in their 60s. Because the new system requires the couple to claim the less generous Universal Credit rather than Pension Credit, as at present, they will be worse off under the new system.

16 August 2012

Prepared 21st November 2012