Waveney MP, Peter Aldous and TV and radio presenter Jeremy Vine came together with Marie Curie and the Motor Neurone Disease Association to mark the release of a new parliamentary inquiry report, which found that the current benefits system for dying people is ‘not fit for purpose’.
The damning report from the All Party Parliamentary Group (APPG) for Terminal Illness found that the current rule that you must only have six months or less to live to get fast access to benefits is ‘outdated, overly-time consuming and demeaning’, and does not make any sense.
Information uncovered during the inquiry shows that the current ‘six-month rule’ definition of terminal illness, used extensively to determine how quickly someone gets access to benefits or pensions, was invented by politicians almost 30 years ago, and has no clinical evidence to support its use.
The inquiry heard how terminally ill people and their families face devastating and far reaching financial hardship and crippling debt, due to problems accessing benefits.
One bereaved husband said: “My wife was terminally ill for over three years – we effectively lost everything we ever worked for and I am now left with debts of over £20,000.”
Peter Aldous said: “The stories from people who have experience of the ‘six-month rule’ are upsetting and difficult to read. No-one with a terminal illness should have to face financial hardship or emotional distress, because of delays or challenges accessing benefits, when they have limited time left to spend with their loved ones.”
“I’m thankful to the APPG for Terminal Illness for drawing our attention to this important issue, and to Marie Curie and the Motor Neurone Disease Association who have been campaigning for the six-month rule to be scrapped and replaced with a fairer system based on clinical judgement.”
TV and radio presenter and Motor Neurone Disease Association Patron Jeremy Vine, said: “It is appalling that terminally ill people often struggle to get the benefits they need quickly and easily, when they should be making the most of the time they have left. I was humbled to meet people from across the country, campaigning not just for something they believe in but for something which will make such a big difference for thousands of people both now and in the future.”
Scott Sinclair, Head of Policy and Public Affairs at Marie Curie, said: ‘Having the support of Peter and Jeremy is vital to terminally ill people, who find themselves struggling to cope with an unfair and insensitive benefits system, all the while coming to terms with a terminal diagnosis.
“Whether somebody has six months to live or longer, their needs are the same – it cannot be right to deny them access to the financial support they need based on something invented by politicians’ decades ago.”
MND Association’s head of policy and campaigns Susie Rabin said: “The drop-in gave representatives from the MND Association who have had personal experience of the benefits system not working for them the chance to share stories with MPs – the very people who can put an end to the use of the system which the report rightly describes as ‘outdated, overly-time consuming and demeaning.’
“We are grateful for the support of Jeremy Vine and the MPs who came along and listened to why the need to scrap the six months rule is so vital. We hope that with so much evidence building up Parliament will act now to change the law so that all people with a terminal illness, like motor neurone disease, can use the fast-track process to access the benefits they desperately need.”
The APPG recommends that the UK government scrap the ‘six-month rule’ and adopt a new definition of terminal illness, based on a new law in Scotland that will allow clinicians to use their own judgement to certify if a person is terminally ill, with no arbitrary time limit. The inquiry found that the medical profession would support this change.
The report’s findings and recommendations are backed by Marie Curie and the Motor Neurone Disease Association. Local people can help change the law by signing the ‘scrap6months’ campaign petition, which will be handed in to the new Prime Minister at No.10 Downing Street in early August.
If you're living with a terminal illness or caring for someone, call the Marie Curie Support Line on 0800 090 2309 for support, or go to mariecurie.org.uk/help.
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