Andrew Lewer column: Months of lobbying paid off for Motor Neurone Disease sufferers

Motor Neurone Disease (MND) is a terrible condition. It is progressively debilitating as your motor function begins to shut down.It is rapid, merciless and, except for a very few cases, terminal.

A third of sufferers die within a year of first symptoms and 50 per cent by two years. The impact for the patient is seismic, as it is for their loved ones.

Time is everything for those with this disease with no cure.

Medical treatment and adaptations for the sufferer’s house are essential and, of course, there is often the issue of money.

There are special rules for people with terminal illnesses that can fast track benefits to clear the way for them and their family to concentrate instead on the important stuff.

There was a blind spot though. Under the old rules, a doctor had to fill in a form stating that you had less than six months to live so you could fast-track your benefits and, crucially, not to be subjected to benefit reassessment interviews.

Lots of people with MND did not qualify as they might have 12 or 24 months to live and therefore had to deal with the ignominy and worry of having to be reassessed.

Some fell through the cracks and lost benefits; by the time the appeals were won, and monies restored, it was often too late.

It was a completely unacceptable situation. Something had to be done.

The #ScrapSixMonths campaign, organised by the Motor Neurone Disease Association (MNDA) and Marie Curie charities, did just that.

Three years ago, the campaign was launched to change the Special Rules for Terminal Illness which governs fast-track access to benefits.

They campaigned for people diagnosed with conditions such as MND to automatically qualify under the fast-track rules.

The Motor Neurone Disease Association UK headquarters is based here in Northampton. The first ever lobbying contact I had was from them.

Their email arrived only a couple of days after I had been chosen as a candidate and by the time I was elected, I agreed to join the All-Party Parliamentary Group (APPG) for MND to raise awareness of the condition to MPs and lobby the Government for improvements in health and social care like the #ScrapSixMonths campaign.

We organised meetings with ministers from various departments and we wrote letters, setting out our arguments.

When one minister changed jobs, we did the process all over again. We organised parliamentary events in London with patients and their families to meet MPs and share their experiences.

Every time we saw the minister in the corridor or tea room, we spoke to them about the issue. After a year or so, we had a breakthrough.

The DWP announced a review and a full consultation. This was welcome news, but then deadlines were missed. The momentum within DWP seemed to wane, so we kept up the pressure. I asked the very first PMQ after the 2019 election on the issue as chairman of the APPG and campaigned all over again.

Then came the good news a few weeks ago. The DWP extended six months to 12.

It was not everything we wanted, but it was an important victory anyway. Campaigns like this are a hard grind and are 95% behind the scenes, but they are some of the most satisfying parts of being an MP.