Scrap 6 Months – Steph’s story

Widow Steph Douglas is calling for the Government to change the law to ease the financial burden on the families of people with a terminal illness.

Steph and husband James faced a string of financial worries when his initial benefits claim was refused, despite his diagnosis of motor neurone disease (MND).

It was only when his consultant signed a form giving him access to a fast-track process that James was able to secure the benefits he was not only entitled to but desperately needed.

The couple and Steph’s sons Brandon, now 15, and Ethan, now 11, moved into a new three storey townhouse in Doncaster in September 2017 and were looking forward to the arrival of a new baby. Just six days after Ralphie was born in November, James, aged just 29, was diagnosed with MND and told he may not reach his 32nd birthday.

Steph remembers: “We had so much to be excited about and then we’re told James has a terminal illness. You can only imagine the mix of emotions.”

Reality hit quickly. The couple had ploughed their savings into their new home and with Steph on maternity leave their income was already set to reduce over the coming months.

Steph said: “The specialist MND nurse we saw that day advised us to apply for Personal Independent Payment straight away, even though James was still working.”

The symptoms of his MND already restricted the movement in James’s hands so Steph spent four hours filling in the comprehensive form with him. Then followed an assessment interview. Around the same time James’s symptoms meant he had to cut his hours at work, reducing the family’s income.

Steph explains: “We were learning more about MND and the care James was likely to need, the equipment, housing adaptations, the number of medical appointments we’d have to drive to… it was all going to put a massive financial strain on us.”

Then came the news that James had been refused PIP.

He described to a meeting of the All Party Parliamentary Group on MND in March 2018 how that decision caused ‘great stress and anxiety as all I could think about was our future finances when I would no longer be able to work’.

Indeed in February James had to give up working altogether and the couple had to rethink their long term plans.

Steph brought forward her planned return to work as a theatre practitioner for the NHS by three months to June to increase their household income but on a part time basis so she could care for James.

But that still left a four month financial black hole and the worry of living on just one part time wage after that.

The couple contacted the MND Association’s benefits advice service. The experts suggested James took his claim to the mandatory reconsideration stage which could take on average eight weeks. In the meantime, James’s consultant discussed a DS1500 form which gives access to the Special Rules for Terminal Illness fast-track process. To sign it, the current rules state the patient should have a life expectancy of six months or less.

Steph said: “The consultant said he felt James had a longer life expectancy that but that this was a way to access the benefits as soon as possible. James accepted that but it put a real doubt in my mind that James really did have less than six months – it was just another worry on top of everything else.”

In late March, just two weeks after lodging a new claim for PIP using the DS1500 form James began to receive the much-needed financial support.

Steph said: “It was such a relief to know we had money coming in other than just my maternity pay. The money made such a difference – it gave us financial security which took away at least that worry. We were able to get carers in to help James which gave me time to look after the boys and work. It allowed us to focus on family life.”

James described the process to the APPG as: ‘a lengthy, stressful, time consuming pointless exercise that I feel could be made much simpler for people with terminal illnesses such as MND who will only deteriorate with time and never get better or recover.”

In January this year, James fell at home as a result of his MND symptoms and suffered a heart attack. He died in hospital four days later.

Steph is carrying on the campaigning work James did in an effort to get the rules changed.

“It was only thanks to the consultant signing the DS1500 form that we got the money when we did otherwise I don’t know how long we’d have been waiting,” said Steph.

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262