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

Part of the debate – in the House of Commons at 2:58 pm on 8th September 2022.

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Photo of Justin Tomlinson Justin Tomlinson Conservative, North Swindon 2:58 pm, 8th September 2022

As the Minister at the time who triggered these very welcome changes, I am very proud to speak in this debate. I must say that in my 12 years as an MP this is definitely my proudest moment, and this legislation showed me the very best of politics and some of the more frustrating parts of politics—I am certainly free to share some of those behind-the-scenes things.

First, I pay tribute to the people who made this happen and got us here today, starting with many politicians. This was a genuinely cross-party initiative, but the three politicians who stood out the most for me were Jessica Morden, who will also be making a contribution, my hon. Friend Andrew Lewer and Madeleine Moon, a former MP. Throughout the process, they were kind, sincere, very generous and incredibly patient, something I will come on to later.

The leading charities that provided many cross-party MPs with a reminder of the importance of the issue included the MND Association, Parkinson’s UK and Marie Curie. The brains behind this legislation were a combination of my private office, Dr Emily Pikett, who is the DWP’s medical policy adviser, and her team.

We configured a roundtable of the greatest, including those charities that I have mentioned, plus Macmillan, the Multiple System Atrophy Trust, Sue Ryder, the National Bereavement Alliance, Hospice UK, the British Medical Association, the National Nurse Consultant Group, the Association of Palliative Care Social Workers, the British Lung Foundation, the Queen’s Nursing Institute, the Palliative Medicine Association and the Royal College of Physicians, and many, many hundreds more people who work on the frontline in healthcare and palliative care, along with families and patients, contributed. Ultimately, that showed what can be done when Parliament is working at its best, because we have ended up with united support across the board and we are all very pleased, because this will make a genuine difference to people.

I share the shadow Minister’s frustration that it took so long, believe me. I think I went through about five sets of DWP oral questions where the official line was: “We are working at pace across Government.” Believe me, a little bit of my soul disappeared as I saw the regular reminders, predominantly from the hon. Member for Newport East, to explain just how quick “at pace” is, and as I wondered how I could come up with a slightly different variation of those words. In defence of, first of all, the parliamentary process, what would normally happen is that a Secretary of State would ask their Ministers to work out where they would like to prioritise some changes. That would be presented and then as a Department through negotiations with Treasury, particularly where things are going to cost more money, we would work out which ones we could deliver and when. If we have an idea that we want to do something, generally we try to work out how to get from A to B.

At the time, I was working for the wonderful Amber Rudd, who was just a whirlwind of enthusiasm and super sharp. Anyone who had to present their ideas to her really needed to be on top of their brief. She did not suffer fools, and this was one of the ideas that I pitched to her. Then I mentally thought, “Right, over the next three months we’ll start working up some options and work out some costs.” To my horror, the following morning, on Sky News I think it was, she announced that this was then a priority, so very quickly Emily Pikett and her team and I had to be locked away to try and come up with how we would get from A to B.

Initially, the general consensus of stakeholders is what we are now seeing proposed in Scotland. It would have been very tempting to follow that route, and certainly the intentions of the Scottish Government were good, but as they soon discovered, it is not that simple, because we are all terminally ill. Therefore, we cannot possibly give everybody the fast-track access to the benefit, because the system would be overwhelmed. It has to be prioritised for those who are within a certain period of time. What the Scottish Government have discovered is that they now have to create a whole raft of exemptions to the principle of just being terminally ill. They have now created an even more complex process than the original six months rule, which was deemed to be flawed because it was too complex.

Fundamentally, we arrived at this solution because—GPs are the best at summing this up—there is no worse role for a GP than to have to sit one of their patients down, someone who they have been supporting, and say, “We have reached the end of the road. We are now switching our focus to palliative care.” As the current system stood, the GP would have to have that conversation twice, once at roughly the 12-month point and once at the six-month point, to trigger the fast-track process through the DWP for much-needed financial support. The very simple solution was to merge the two conversations together so that it is consistent.

That had the double benefit of reducing the need for the GP to have that dreadful conversation twice, but also, crucially, of raising awareness, because after that first conversation patients and their families understandably have got a million and one other priorities to navigate in their precious final moments. At least now in that conversation, as the palliative care process is being planned, they can be made aware of this additional financial support, and in real terms this will typically reduce the period to access that support from 16 weeks to less than five days.

I understand the shadow Minister’s point about making sure that is resourced. We can be confident of that, because the process is relatively straightforward. In effect, once someone has that note from the GP, the support is automatically triggered, which is why we do not need the 16 weeks. That helps with some of the pressures and will probably save a little bit of time for those who do wait 16 weeks by lifting them out of that unnecessarily long process.

It was a frustration in Parliament that this took so long, and it was one of those where everybody agreed. I remember a Treasury Parliamentary Private Secretary lobbying me very strongly on behalf of one of their constituents, saying, “You’ve got to get this sorted.” I said, “Right, well you can take that back as a note to your own Department then, thank you very much.”

I was absolutely thrilled that, just before my final few days as a Minister, we got the confirmation that we were able to make those immediate changes to the newer benefits. I am incredibly proud, as I said, that the Bill will now sort out the final parts of PIP, DLA and the attendance allowance.

My final plea is to our Scottish friends. I regularly met my Scottish ministerial counterpart, and I put it formally on the record that I absolutely understand that they did it with good intentions. I also understand that, as a matter of principle, they always want to do something different because, in their mind, that strengthens their case for independence. What they have done, however, is create a system that is more complex, because adult disability payments remain under the UK Government’s control, so there is the nightmare scenario of still having the two things. All those stakeholders, particularly Marie Curie, would love to see the Scottish Government adopt our approach in this case, so that there is a consistent approach. Terminal illness is not a time for political divide and debate. That is my plea, so that everyone can benefit.

I thank everybody who made this possible. Everyone who has contributed will have made a genuine difference to people in their hour of need, and we can collectively be very proud.