Social Security (Special Rules for End of Life) Bill [HL]

Baroness Noakes Excerpts

2nd reading
Tuesday 24th May 2022 Lords Chamber

[Baroness Noakes (Con)]

My Lords, I wholeheartedly support this short but very important Bill; we should get it on to the statute book as rapidly as possible. I could stop there, because my noble friend the Minister has introduced the Bill with her customary diligence, but I hope that the House will indulge me if I spend a few minutes on the plight of motor neurone disease sufferers. I pay tribute to the tireless campaign waged by the Motor Neurone Disease Association to achieve the changes in the Bill, and indeed the similar changes already made to universal credit and other benefits.

Motor neurone disease is a terrible disease. It involves the degeneration of motor neurones so that muscles weaken, and moving, swallowing, speaking and breathing all become more and more difficult. There is no cure available. Because it does not generally affect the senses, sufferers are only too aware of the way in which their bodies are failing, which is a particularly cruel aspect of the disease.

There is no single test available for motor neurone disease, and its low prevalence means that it can take some time for a diagnosis to be made once the onset of symptoms is noticed. Once diagnosed, one-third of sufferers die within a year, and half die within two years. There are around only 5,000 people living in the UK at any one time suffering from motor neurone disease, which is probably why they have not been seen as a national priority. I am very glad that the DWP has now started to tackle their plight in the benefits system.

The rate of progression of the disease varies considerably, and this has caused huge problems in the past for motor neurone disease sufferers in getting access to benefits on a fast-track basis, because it was hard to pinpoint when the previous six-month horizon for a reasonable expectation of death came into play. The extension to 12 months and to an end-of-life approach is not a perfect solution but it should make it much easier for people to be fast-tracked on to benefits, which will do something to make life easier for them and their families as their lives are inevitably taken by the disease.

I thank the Government for making these changes and the ones already made in secondary legislation. I have just one request for my noble friend the Minister: I hope that she will commit to the DWP monitoring the impact of these changes and standing ready to make further changes if the data show that they do not deliver the benefits expected for MND sufferers and, indeed, any sufferers debilitated by life-ending disease.