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

Baroness Brinton Excerpts

2nd reading
Tuesday 24th May 2022 Lords Chamber

[Baroness Brinton (LD) [V]]

My Lords, this short Bill is very welcome. I propose to make a contribution only to ask a couple of questions about it and to raise one other issue.

From working with people with serious life-limiting illnesses and the charities that support them over recent years, I have heard them express real frustration with the inability to access benefits and support that they are entitled to as they face the end of their days. I look forward to the contribution from the noble Baroness, Lady Finlay, because I know that other doctors have said how difficult it is to estimate the six-month period correctly, and that by that stage the individuals have often had to give up work, frequently at short notice. Their family members have found that their lives are impacted too, because many now act as carers for their loved one, which also impacts on their own jobs and any other roles they may have.

It is reassuring that the period for special rules will now be extended to 12 months, and I hope that doctors will find estimating that period easier. I ask the Minister a practical question: how will doctors in both primary and secondary care, who are obviously key to this, hear about these changes?

I will also ask the Minister about how the special rules process is managed. The Government’s information page on these rules does not explain for the ordinary member of the public how applications are processed and how long they take under the current rules. I am grateful to the Minister for her explanation in her introductory speech that these applications are expedited, but I have also picked up that there is some concern that extending it to a 12-month period might slow down the decision-making time in the DWP. Can the Minister assure your Lordships’ House that this will not be the case? What will the target be for approval of these special end-of-life benefits applications, once the doctor’s letter and forms have been received?

I also want to look at the special rules for end of life as they affect children and young people. Far too often we associate the end of life only with adults. I am grateful to Together for Short Lives for its briefing and for the honour of supporting and working with it over recent years. Children’s palliative care, or the slightly different needs of these families facing the end of life of their child, is too often forgotten. Many seriously ill children and young people who need palliative care also need access to disability living allowance, or PIP for those aged over 16.

It is well evidenced that the families of those facing the end of their lives have increased costs compared with other families. Nearly two-thirds of families with severely disabled children say that they have had to give up work to look after their child, and on average they have lost £21,270 from their annual family income. I hope that the new 12-month special rules mean that these families with a child who has a very life-limiting illness will get access to DLA and to PIP.

I also hope that there might be the possibility of giving seriously ill babies and small children access to the DLA mobility component. It appears that there is an anomaly for those aged under three. The children we are talking about often have to use ventilators and other heavy kit, often with the need for other monitors, oxygen supply, spare tubes and tracheotomy emergency bag. These parents rarely get through a night without alarms going off.

My family had to live this life for three years. One of my twin granddaughters had a ventilator and heart monitor until she was three. Only family members trained by the wonderful Evelina London Children’s Hospital were allowed to babysit or stay overnight with her. I have to tell your Lordships, the alarms went off most nights. It was an exhausting privilege to be able to help, but I also know from my son and daughter-in-law that getting anywhere with that equipment was close to impossible, let alone going on holiday. Our granddaughter was fortunate in that she grew out of her problems, but sadly many children do not, and parents know that they face a very different type of parenthood that is invisible to far too many people.

The problem is that, although DLA is available to all families who incur extra costs as a result of meeting the additional care or mobility needs of a disabled child, only children over the age of three can receive the higher-rate mobility component of DLA. The Social Security Advisory Committee published a report in November 2020 and recommended that the DWP consider extending the higher-rate DLA mobility component to these children under the age of three.

These families are also grateful for the Family Fund mobility support scheme but the criteria for children under three is different from those over three, in that one parent must be able to drive. The DLA mobility component award to children over the age of three does not depend on a family’s ability to drive. These families often have to rely on taxis; they cannot take these children on buses or trains, partly because of the kit and partly because the children are very vulnerable.

I appreciate that the Minister may say that this is out of scope of the Bill, but I would be grateful if she would agree to a meeting with myself and Together for Short Lives to see if there can be a change for this very small group of disabled and severely ill children aged under three.

Returning to the Bill, I look forward to hearing contributions from other Members of your Lordships’ House, and to the Minister’s response.