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.

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

Baroness Brinton Excerpts

3rd reading
Wednesday 22nd June 2022 Lords Chamber

[The Deputy Speaker (Lord Faulkner of Worcester)]

The noble Baroness, Lady Brinton, is taking part remotely, and I invite the noble Baroness to speak.

[Baroness Brinton (LD) [V]]

My Lords, my noble friend Lady Janke cannot be in her place today, so I am delighted to thank, on behalf of the Liberal Democrat Benches, the Minister for her remarks and all Peers who have taken part during passage of this Bill. I also want to thank the Minister’s officials, who have been very helpful. It was encouraging that the Bill is supported cross-party. It may be a short Bill, but we believe that its effects will be transformative to those individuals, and their families, who have to face a terminal illness and the financial shocks that go with it as they live the last few months of their lives.

We, too, decided not to table amendments, though we would have liked to, because we felt it was important that this Bill proceeded quickly. Prior to the Second Reading, we had discussions with Marie Curie and other organisations about whether the Government should review the impact of the legislation after a year and make an assessment as to whether the provisions of the Act have had a significant impact on reducing levels of poverty for individuals with a life expectancy of less than 12 months.

We draw the same parallel as the noble Baroness, Lady Sherlock, that in Scotland they deleted any reference to timeframes. I think this would help to give us a comparator once the Bill has been enacted and put into practice in England for a year.

I want to pick up also the point that the noble Baroness made about time for the processing of claims. I made this point at Second Reading, and I hope that for everyone it will be as speedy as possible. I was reassured the Minister said that moving it to 12 months would not slow the process down, but we remain concerned that for some people it is still not as fast as it should be, given the straits that they find themselves in.

At the Second Reading I raised the current anomalies in the rules for the benefits of severely disabled children aged under three, compared to those over three. The Minister kindly agreed to arrange a meeting with the relevant Minister for myself and Together for Short Lives. Unfortunately, I have been offered a policy officer to answer my questions by email, which, while being very kind—and I appreciate the offer—is not quite what the Minister said. As I said at Second Reading, this is a policy decision to treat seriously ill small children differently to their older peers, so please can I repeat my request for a meeting with the relevant Minister?

That aside, from these Benches we welcome this short but vital Bill and look forward in hope that it will ease some of the financial difficulties faced by terminally ill people and their families.

[Baroness Stedman-Scott (Con)]

I thank the noble Baronesses, Lady Sherlock and Lady Brinton, for their supportive comments, and may I say that we are doing everything we can to get this through the other place in time? Everybody is on red alert to do so.

I would particularly like to address the points made by both noble Baronesses, Lady Sherlock and Lady Brinton. The noble Baroness Sherlock is interested in the department’s approach to evaluating the changes being proposed in this Bill and whether this will also cover a comparison with the approach taken by the Scottish Government. I can confirm that we will continue to monitor our own approach and watch with interest the different approach taken by the Scottish Government as it is fully rolled out.

We will also continue to conduct audits of medical evidence provided to us in support of claims made under the fast-track special rule process and to monitor feedback that claimants provide to the DWP through our existing communication channels. The noble Baroness, Lady Sherlock, also expressed interest in the metrics that would be used to judge the success of the new approach for claims made under the special rules for end of life. The department considers the time taken for these claimants to receive the financial support that they are eligible for as a measure of the policy’s success. I am extremely pleased that the department has a strong record of processing claims made under the special rules in a matter of a few days on average. We also had a constructive relationship with end-of- life charities and will continue to work with them to ensure that the policy intent behind the Bill is being met.

On the noble Baroness’s question about people dying while waiting for the outcome of a claim under normal rules, we want to do all we can to ensure that people get the support they are entitled to while living with a long-term disability or health condition. It is obviously incredibly sad when someone passes away while waiting for the outcome of a PIP claim. The cause of death for PIP claimants is not collated centrally by the department. However, there is no evidence to suggest that someone’s reason for claiming PIP was the cause of their death, and it would be misleading to suggest otherwise.

Finally, the noble Baroness, Lady Sherlock, is interested in whether we will check that claimants find the process easy to manage. I assure all noble Lords that the department is engaging with stakeholders, and clinicians involved in supporting people to claim under the special rules, to ensure that they understand and can navigate the process. We will continue to do so. The department is also looking at making process improvements for the end-to-end customer journey for claims made under the special rules and will use the direct experience of claimants to inform that work as it progresses.

Regarding the point made by the noble Baroness, Lady Brinton, I did agree to a meeting. I am not quite sure what has happened, but I will go back and advise people that we will meet. It will get me into trouble but I will do it. I have held two all-Peers briefings on this Bill. As always, my door is open. Going forward, the Minister for Disabled People, Health and Work, who is sponsoring this Bill in the other place, will be happy to reach out on any outstanding questions that noble Lords may have.