New Inquiry launched to scrutinize benefits system for dying people

A group of cross-party MPs has launched an Inquiry in parliament into the rule that you must have six months or less to live to get fast access to benefits. 

The Inquiry will scrutinize whether the current welfare benefits system helps or hinders dying people get the support they need.  Evidence shows that around 10 people every day are dying while waiting for their benefit claim to be answered^.[i]

Currently terminally ill people can only get quick access to benefits if a doctor or nurse believes they have less than six months to live. The six-month rule means that many terminally ill people with unpredictable illnesses have to spend time filling in forms and attending interviews with benefits advisors.  Some must even go to coaching sessions aimed at getting them back to work.

The Inquiry will consider the six months left to live definition of terminal illness and determine whether the six-month rule is fit for purpose.  Statistics from the Department for Work and Pensions (DWP) show that 95% of people accessing benefits via the six-month rule have terminal cancer which means people with unpredictable terminal conditions like lung and motor neurone disease often miss out.

The All Party Parliamentary Group for Terminal Illness will be calling on Ministers, Government officials, clinicians, charities, and individual people affected by terminal illness who have experience of the benefits system. 

Drew Hendry MP, Chair of the All Party Parliamentary Group (APPG) for Terminal Illness, said: “I’m determined to ensure that terminally ill people get fair access to the benefits system and that they are treated with dignity and respect.

“Over the last year, we have heard far too many stories of people not only having to deal with a terminal diagnosis, but also having to fight against the DWP because it won’t recognise them as terminally ill. This means that people who are dying are being forced into work capability assessments, jobseeker interviews, and having their benefits arbitrarily stopped.

“We are launching an Inquiry to get to the root of this and to make sure that the Government does right by people who are dying and their families, rather than adding to their distress.”

Professor Paddy Stone, Marie Curie Chair of palliative and end-of-life care at University College London, said: “Studies repeatedly show that doctors’ predictions about how long terminally ill patients will live are inaccurate and unreliable.  People should be able to access support based on need not a number, which we know is extremely difficult to determine. We need to change the law so that, in order to access benefits quickly, a doctor or nurse would only need to certify that a patient had a progressive illness which was likely to lead to their death. This is surely sensible and compassionate and would remove the need for doctors to reach for the crystal ball to help their patients access the benefits to which they are entitled.” 

Matthew Reed, Chief Executive of Marie Curie, said: “It’s outrageous that dying people and their loved ones are wasting their precious time left together fighting for the benefits they need. Many people have shared how they’ve seen terminally ill family and friends struggle to make ends meet because they were told they had more than six months to live.

“One lady wrote about her daughter, who worked hard all her life but was refused benefits after she was told she had a terminal illness. Having endured stress and worry and having fought for the support she needed, she was eventually awarded her benefits – a week after she died.  That can’t be right. 

“Another lady wrote about how her dying mum worried about money in her final days. She had lost a lot of weight through her illness but couldn’t afford new clothes. She needed the heating up high but worried constantly about the cost, and stopped doing little things like meeting her friends to play bingo.

“It’s good that the Secretary of State for Work and Pensions Amber Rudd has said she will look at the issue, but dying people can’t wait – they need change now.  That’s why this Inquiry in parliament is so important.”

A fair definition of terminal illness for social security has already been agreed in Scotland by Scottish Government and supported by all parties and MSPs. The definition is being supported through clinically-developed guidelines (currently out for consultation), with backing from the medical community.

The APPG will aim to produce a report with recommendations for Government in the late Spring.  To get involved, go to https://bit.ly/2EM0qFK.