Rt Hon Iain Duncan Smith, MP

Secretary of State

Department for Work and Pensions

Caxton House

Tothill Street


SW1H 9NA                                                                       

22nd February 2013

Dear Mr Duncan Smith,

We were very pleased to read yesterday that you have instructed officials to look again at how the under-occupation penalty for social housing tenants will affect couples who are unable to share a room due to one partner having a disability.  We write asking for confirmation that there will be a re-examination and, if so, what form this will take.  We would very much support a re-examination and endorse the letter recently sent to you by carers and disability charities. 


MND Scotland and the MND Association represent people with Motor Neurone Disease (MND) across the UK.  MND is a rapidly progressing, terminal neurological illness.  The median average life expectancy, following diagnosis, for people with the illness is 14 months.  During the course of the illness, a person with MND will become severely disabled with symptoms which include losing their ability to walk, speak, feed themselves and breathe unaided. 


As a result, most people with MND come to rely on a wide variety of equipment to assist them in their daily living.  Much of this equipment such as a wheelchair, special medical bed, hoist, breathing equipment and speaking aids are needed in the bedroom to help the person with MND keep safe during the night. 


This equipment, however, makes it almost impossible for a spouse/partner to sleep in the same room and share a ‘marital bed’.  Usually, the person with MND will stay in the main bedroom with all their equipment at hand and their carer will move into a smaller second bedroom to catch some much needed sleep to enable them to meet the needs of their loved one. 


We therefore do not believe that people who need an extra bedroom for this reason are part of the “under-occupancy” problem that the Government wishes to address. With such limited average life expectancy and rapidly deteriorating health, people with MND should not be faced with a requirement to move to a smaller home, or endure a reduction in housing benefit; the distress and hardship this would cause cannot be justified.    


We urge you to consider revising the scheme so that people with MND and their families are not unjustly penalised, and will be happy to work with your department to ensure their needs are met.


Yours sincerely


Craig Stockton                                                                                                      Sally Light

Chief Executive, MND Scotland                                                                       Chief Executive, MND Association