Disabled People

Lord Patel Excerpts

Thursday 28th June 2018 Lords Chamber

[Lord Patel (CB)]

My Lords, I too look forward enthusiastically to the maiden speech of the right reverend Prelate the Bishop of London. I remember her work when she was Chief Nursing Officer, championing the cause of patients and their involvement, and introducing the concept of the modern matron. It is always a pleasure to take part in a debate led by my friend—I mean that in the true sense—the noble Baroness, Lady Thomas of Winchester.

I want to highlight the specific challenges faced by children and young people who suffer from life-limiting and life-threatening conditions. The needs of these children, who are often diagnosed at birth, is varied and often complex, making it crucial that they can access palliative care throughout their illnesses and their lives. The pressure on parents of having a child with a life-limiting condition is immense, and most relationships suffer, with 36% experiencing a breakdown of the family, making social care vital. A national study by Julia’s House children’s hospice and Bournemouth University found that 75% of couples caring for a child with a life-limiting condition have no access to respite care. The Carers Action Plan, launched at the beginning of June, says:

“The Department of Health and Social Care will fund a project on actions to promote best practice for local authorities, clinical commissioning groups, and other service providers and commissioners on carer breaks and respite care”.


Research by the children’s charity Together for Short Lives found that while 84% of clinical commissioning groups reported that they commission short breaks for children who need palliative care, more than one in five local authorities do not commission short breaks for children with life-limiting and life-threatening conditions, despite having a legal duty to do so.

The second issue concerns the grants to children’s hospices. Children’s hospices provide crucial support for parents and carers—92% of children’s hospice charities provided end-of-life care to children and young people in 2015-16. Despite this fantastic work, voluntary sector children’s palliative care providers receive, on average, 22% of their charitable costs from statutory sources, compared to an average of 33% for adult hospices. The NHS England Children’s Hospice Grant amounts to some £11 million per year—not a large sum of money—despite increasing costs and demands.

Medical advances mean that 55,000 young adults aged between 18 and 40 have life-limiting conditions in England. The Carers Action Plan also says that the Department of Health and Social Care will fund a project to support parent carers to navigate the transition from child to adult services as their child approaches the age of 18.

Will the Minister make sure that the project outlined in the action plan includes young people with life-limiting and life-threatening conditions in its scope? Secondly, in light of the fantastic work that children’s hospices do and the pressure they take away from the NHS services, can she commit to bringing about parity of funding between children’s and adult services, including by increasing the NHS England children’s hospice grant? If that matches the support given to adult hospice services, it will come to some £25 million per year—not a large sum, compared with a budget of £110 billion.

Finally, will the Minister commit to assist in providing NHS clinical commissioning groups, sustainability and transformation partnerships and local authorities with guidance reminding them that they are responsible for planning and funding short breaks for children with life-limiting conditions? I realise that the Minister is not directly responsible for what I am asking for, but if she agrees, will she pass this on to the relevant Minister and ask that answers be given in writing and placed in the Library?

Welfare Reform and Work Bill

Lord Patel Excerpts

Wednesday 9th December 2015 Lords Chamber

Moved by

[Lord Patel]

50: Clause 13, page 14, line 24, at end insert—
“( ) Subsections (2) and (3) shall not come into force until the Secretary of State has laid before both Houses of Parliament a report giving his or her estimate of the impact of the provisions in those subsections on the—
(a) physical and mental health,(b) financial situation, and(c) ability to return to work,of persons who would otherwise be entitled to start claiming the work-related activity component of employment and support allowance.( ) Regulations bringing subsections (2) and (3) into force shall not be made unless a draft of the instrument has been laid before, and approved by a resolution of, each House of Parliament.”

[Lord Patel (CB)]

My Lords, my turn has come—rather sooner than I thought it would. In moving Amendment 50, I will speak to Amendment 53 in my name. I am very grateful to all the noble Lords who have put their names down supporting my amendments.

These amendments would prevent Clauses 13 and 14 coming into place unless the Government can demonstrate to Parliament’s satisfaction that they will achieve what they state—namely, supporting people into work—without having a detrimental impact on people’s financial situation or health. At Second Reading I raised significant concerns about the proposals that I know were shared by many in this House and by Members in the other place, too, including Members in the Minister’s own party. They tabled amendments that were not moved.

What do I see as the problem? Many organisations, including Macmillan Cancer Support, Rethink Mental Illness and Parkinson’s UK, oppose these clauses because of the detrimental impact the changes will have on people who are ill or debilitated by their condition. The changes will mean that from 2017 new claimants will receive the same amount as those on jobseeker’s allowance, meaning they will be £30 a week worse off than under the current system. Those claimants, such as people recovering from cancer, will no longer be entitled to additional financial support in recognition of their illness or disability.

In his response at Second Reading, the Minister pointed out that many people with cancer are, at least initially, placed in the support group and suggested that they will not be affected. I agree; those in the support group will not be affected. However, my concern is not that people will not be supported while they undergo treatment for illness. My concern is for those people who either have moved into the WRAG from the support group once their treatment has finished or do not meet the stricter criteria of the support group and are placed straight into the WRAG. The suggestion that the number of such people is small is not true; the Government’s own estimates suggest that it could be above 5,000. Given the transient nature of the benefit, with people moving in and out of the WRAG, the number of people who will be affected is likely to be much higher. My amendments seek more accurate figures as part of the evidence.

What is also not clear, and which is particularly important for people with cancer, is whether those who are in the support group before April 2017 but then move into the WRAG after April 2017 would be classified as new claimants or whether they would be subject to the cut and be put on to the lower rate of £73.10. I hope the Minister will be able to clarify that. I am sure that he will.

The impact of having cancer does not necessarily end once someone finishes treatment and recovers from its immediate side-effects. Common consequences of treatment include: chronic fatigue; extreme pain; mental health problems, including moderate to severe anxiety or depression and post-traumatic stress disorder; urinary and gastrointestinal problems; speech difficulties; and much more. Many of these problems may emerge some time after treatment and last for months or years. I give the true example of Jim, who was successfully treated for prostate cancer. He said, “I suffer lots of problems with my bladder and colon. Being caught short is a constant worry so I have to live my life aware of this constantly”.

It cannot be right to suggest that people like Jim should be treated in the same way as jobseekers who are fit and able to work. If the proposals go ahead, people such as those with cancer who may initially go into the support group, but then move into the WRAG when their treatment finishes, will drop from £109 to £73.10 when they move from one group to the other. For many, this is a huge drop, leaving them in a particularly vulnerable situation, and could compromise the progress of their recovery. I urge the Minister to look carefully at this group of people and the impact that the change will have on them before making any changes to the legislation.

Ahead of the election, the Government made a very welcome commitment that their welfare reform programme would be underpinned by a commitment to protect the most vulnerable and the disabled. People recovering from cancers are vulnerable. Some face side-effects, live with the knowledge that their cancer may return and are in need of support. They are not fit to work. The reason that people receive ESA WRAG or the limited capability for work element of universal credit is because they have been judged as having limited capability to work—in other words, they are too ill to work. Cutting someone’s money will do nothing to address this. It will not improve their health. Indeed, if anything, it is likely to make it worse by causing additional stress and anxiety, with added worries about making ends meet financially.

The Minister made a particular effort at Second Reading to highlight the fact that having limited capability to work is not the same as being unable to work. It is my understanding that someone is placed in the WRAG because their capability for work is deemed to be so limited that they cannot reasonably be expected to look for, or engage in, work. That is why they have been deemed eligible for ESA rather than JSA. People on ESA WRAG are simply too ill to work at this point in time. These people need time to recover and a degree of financial support to help their recovery. Cutting people’s benefit levels will not help to support them back to work.

At Second Reading, the Minister referred to an OECD report as evidence for the change. The report stated:

“Financial incentives to work can be improved by either cutting welfare benefit levels, or introducing in-work benefits while leaving benefit levels unchanged”.

However, the report to which the Minister referred looked only at unemployed and inactive individuals, not people who are unable to work due to illness. Indeed, if you were to look at the research on people who have limited capability for work due to illness—as people in the WRAG do—the evidence is very different. For example, a study by researchers at Sheffield Hallam University in 2011 found that cutting benefit levels for those who are unable to work due to illness, or recovering from illness, does not result in more people returning to work. Many people with illnesses and disabilities are significantly worse off as a result. Research by Macmillan, for example, found that people with cancer were, on average, £570 a month worse off because of the financial impact of their diagnosis. Many cancer sufferers struggle to cope financially. There has been recent media coverage of Macmillan research which showed that almost 170,000 people with cancer in the UK cannot celebrate events such as Christmas or a family birthday due to lack of money.

It should be a key principle of the welfare system that those who have worked hard but who find themselves, through no fault of their own, unwell and unable to work for a period—not permanently—will be provided with an adequate safety net. We should not do anything to undermine that principle. It is important to have an assessment of the impact that the changes will have on people’s financial situation and their physical and mental health. Financial pressure will force people to return to work before they are physically and mentally fit enough. I have heard of people affected by cancer who, even on the current amount of money that the WRAG pays, have felt pressured to return to work before they were well enough. This has led to them returning to work too soon, and their health suffering as a result, to the extent that they now need to be in the support group. If this is happening on the current payment rate of £102, I can only imagine what will happen when the payment drops to £73.

Much has been said about the role that work can play in keeping people healthy. I do not doubt for one minute that that is the case. For many people who have been ill, returning to work represents a return to normality and a sign that they are reclaiming their life. Many people talk about the importance of becoming an employee again and being defined by their work status, not their cancer. However—and this is important —that only holds true if the work they return to is right and appropriate for them. It has to be “good work” for them, by which we mean work that is suitable, appropriate and meets the needs of people returning from illness.

Amendments similar to mine were tabled by Conservative Members in the other place and sought to highlight the significant impact that the changes will have. The proposed changes are neither sensible nor morally right. While my amendments seek the evidence to support Clauses 13 and 14, the important point is that people who are recovering from serious illnesses and are not considered fit to work should not be further financially penalised. There is an opportunity here for the Government to demonstrate their commitment to the vulnerable and disabled by rethinking the proposed changes.

As I said at Second Reading, when, in 2012, the Government lost several consecutive votes, the then Bill was converted into a financial privilege measure. I hope that that will not occur now but in 2012, despite the fact that the Bill was converted into a financial privilege measure, the Minister—the noble Lord, Lord Freud—came up trumps and agreed to put people who are vulnerable into the support group. I hope he is minded to do the same this time—that is, help those who are vulnerable and ill. I am sure he will do that and demonstrate that the Government support the vulnerable. I beg to move.

--- Later in debate ---

[Lord Freud]

That is a massive question. The short answer is that because universal credit is a much more efficient benefit to administer, we are able, in practice, to put more people on the front line to support those who we need to support. The department has been working very hard, with very precise ways of helping quite a lot of new people doing quite a lot of new things; work progression is one part of that and disability another.

The changes I have been talking about will be accompanied by new funding of up to £100 million per year by 2020-21, which is part of where the money is coming from, to help claimants with limited capability but some potential for work to move closer to the labour market and, when they are ready, to get back into work. We will provide more details on this kind of support next year. In the Autumn Statement, the Government announced an increase of nearly 15% to help people with health conditions return to and remain in work.

There is a great deal of interest in this House and elsewhere about how we will make this employment offer. We will set up a task force, which will include external experts, disabled people and disabled people’s organisations to make sure that we do this in the best possible way.

In this context, I will pick up one other point from the noble Lord, Lord Low, who said that the Work Programme had failed disabled claimants. More generally, the Work Programme clearly has had some astonishing outcomes. In this area, it has taken a group that is traditionally very difficult to get into work and, in the latest cohort, it has got one in 13 people into work for at least three months since joining the scheme. That figure is higher than the expected level of one in 14, and has effectively doubled since the Work Programme started. Then, when it was trying to find its way into what was working, the figure was one in 25.

The noble Baroness, Lady Howe, raised the issue of mental health, which has been of acute concern to us for a number of years and is an issue that I personally have pushed for five and a half years now. We now have a programme of £43 million over the next three years to build our evidence on what works for those who have been long-term unemployed and have mental health conditions. A range of pilot schemes is going through to test what actually works. I am enormously proud of getting that kind of money to this kind of issue, which I suspect has been but a dream for previous Ministers in my position.

Let me address the amendment tabled by the noble Lord, Lord Patel, the noble Baroness, Lady Meacher, and the noble Lord, Lord McKenzie, which seeks to do two things. First, it requires the Secretary of State to publish a report, before subsections (2) and (3) come into force, on the impact that these provisions will have on those affected by the change, particularly the impact on a person’s health, finances and ability to return to work. A similar amendment was laid and debated in the other place. We have, of course, already published our assessment of the impacts, which was made available on 20 July. I can assure noble Lords that the Government are committed to a fair tax and welfare system, and that every individual policy change is carefully considered. How the changes affect individuals will depend on their circumstances, including the nature of their illness or disability, which can vary considerably.

I point out to the noble Lord, Lord Patel, that the proportion of people in relative poverty who live in a family where someone is disabled has actually fallen since 2010. PIP is the benefit that provides a contribution towards some of the extra costs arising from a long-term health condition, and that is protected. I know that the noble Lord is particularly concerned about the effect of this change on people with cancer. I am delighted to be able to confirm that the vast majority of people with cancer claiming ESA are in the support group. This includes anyone who is either preparing for, receiving or recovering from chemotherapy or radiotherapy that will significantly limit their ability to work. Only a small proportion of individuals whose initial diagnosis is cancer will be placed in the WRAG. Employment can obviously play a vital part in supporting an individual’s recovery. Macmillan itself recognises this and stated in a report:

“Many people who are working when they are diagnosed with cancer would prefer to remain in work, or return to their job, during or after treatment”.

I will pick up on the point made by the noble Baroness, Lady Manzoor, and my noble friend Lord Blencathra about Parkinson’s. On its website, Parkinson’s UK recognises that many people with Parkinson’s continue to work for many years after their diagnosis, although to do so they may need changes to the way in which they work. I also need to reassure the noble Baroness, Lady Meacher, that no one who has motor neurone disease is currently in the WRAG.

As other noble Lords have mentioned, we are now committed to replacing Work Choice and the Work Programme with a combined work and health programme, so the support systems should now start to ratchet up, benefiting from the considerable amount that we have learned in the last few years.

There is a large body of evidence to show that work is generally good for physical and mental well-being and that, where their health condition permits, sick and disabled people should be encouraged and supported to remain in or to re-enter work as soon as possible. That is why an important part of this change is the extra resource that we are putting into support to help bring that about.

The second part of the amendment seeks to require that any regulations made under this section of the Bill be made under the affirmative procedure. However, as these measures are being debated extensively throughout the passage of the Bill, I am not convinced that requiring further debates in both Houses on the regulations is a necessary or, indeed, appropriate use of costly parliamentary time.

I can confirm to the noble Lord, Lord Patel, that those who move from support to WRAG will be protected. It will not be regarded as a new claim, as he asked.

I turn now to the amendments tabled by the noble Lord, Lord Layard, and the noble Baronesses, Lady Hollins, Lady Tyler and Lady Howe, which seek to remove work rate requirements from claimants with a mental or behavioural disorder and refer them to IAPT. As already stated, there is a large and growing body of evidence over the last decade showing that work can keep people healthy as well as help promote recovery if someone falls ill. This includes mental health. By contrast, there is a strong link between those not in work and poor health. We also know that the majority of ESA claimants in the WRAG want to work.

At this point I would like thank the noble Lord, Lord Low, and the noble Baronesses, Lady Meacher and Lady Grey-Thompson, for the report that I received yesterday. They brought it to me, and I read it with great interest. I am particularly struck by the impact that being out of work has on people’s health—and that is, of course, the reason that we have announced our intention to have a White Paper. We will continue to monitor the impact of this change over time through regular national statistics.

Amendment 52 was spoken to by the noble Lord, Lord Layard, and my noble friend Lord Lansley. We recognise the barriers that people can face, which is why we are committing these resources to help them find what works best for them. I agree that access—and particularly early access—to treatment services can be crucial to achieving recovery. I genuinely support this part of the agenda, and the noble Lord, Lord Layard, knows that I do, but I do not believe that this particular Bill is the right mechanism to achieve these ends. The Secretary of State does not have the power to offer NHS services to claimants. Even if he did have that power, devolved Governments in Wales, Scotland and Northern Ireland have had power over the organisation and budgets of the NHS within their jurisdictions since 1999, so in practice this amendment would be constitutionally impossible.

I should like to conclude—noble Lords will be relieved to hear—by reminding the Committee that the Government committed in their manifesto to halving the disability employment gap and improving the support we provide to people with mental ill-health and long-term health conditions. The change to ESA and universal credit is an important part of that, so I urge the noble Lord to withdraw his amendment and support the proposition that Clauses 13 and 14 should stand part of the Bill.

[Lord Patel]

My Lords, we have now been talking for about two hours and seven minutes, with some 17 speakers. We cannot claim that we have not given enough time to this group. I do not want to prolong the discussion; I am tempted to take this opportunity to engage with the noble Lord, Lord Lansley—for which I have been waiting for a very long time—but I will wait a little longer. I thank all noble Lords who have taken part, whether they addressed my amendment or the other amendments. I sincerely appreciate very much—I say that on behalf of all of us—that the noble Lord, Lord Freud, does listen to us and his response at length demonstrates that. I am encouraged by some of the things he said relating to my amendment and cancer patients, but I hope that others might have felt that some of the things he said were encouraging. I have no doubt that there are others who did not. I, and, I am sure, others, will read very carefully what he said, encouraged by the White Paper. I thank the Minister and beg leave to withdraw my amendment.

Amendment 50 withdrawn.

Welfare Reform and Work Bill

Lord Patel Excerpts

Tuesday 17th November 2015 Lords Chamber

[Lord Patel (CB)]

My Lords, four years ago, speaking during the passage of what became the Welfare Reform Act 2012, I highlighted the many issues faced by those in the work-related activity group, or WRAG, on employment and support allowance, and the necessity of them receiving adequate financial support for the period when they are too ill to work. I will focus again on that one cause: people who are too ill or recovering from a debilitating disease. The Minister may well remember that I carried four amendments, but he immediately turned the Bill into a money Bill, so the discussion had to stop. But he came true on that occasion and understood the cause that I was fighting for. He brought in a government amendment to put people with cancer in the support group, and I am forever thankful for that. I am hoping to get the same response this time without having to win any votes.

I am having to repeat many of the same points today which I made at that time. Clauses 13 and 14 would cut the amount that people claiming ESA in the WRAG, and with a limited capability for the work element of universal credit, can receive from £102.15 to £73.10. You may say that £30 a week is not a great deal of money, but for people who are on benefits, it is a great deal. They will receive the same amount of money as those on jobseeker’s allowance yet be unable to work. This is a significant cut for anyone to face to a weekly budget.

Let me highlight briefly the individuals who will be affected in the WRAG. I am talking about people such as cancer patients who have undergone debilitating treatments such as chemotherapy or radiotherapy and are in the process of recovering from their illness. I am also talking about people with other diseases such as Parkinson’s or multiple sclerosis, or who have physical and learning disabilities. Mental health has of course already been mentioned. I want to draw particular attention to people who have had a cancer diagnosis. As the Government have stated, it is true that many people undergoing most types of chemotherapy and radiotherapy go into the support group, thanks to the amendment that the Government brought in. I am pleased that that level of support is not being changed. I welcome that.

However, thousands of others who may be experiencing long-term side-effects as a result of their cancer and treatment, or those living with other comorbidities, are placed in the WRAG. While many of these people will have finished their treatment, they will still be suffering from disability. The side-effects of treatment such as chemotherapy and radiotherapy, as is well known to many Members of this House, can be severe and long-lasting. Ask any who have had such treatment and they will tell you what it feels like and for how long. It also varies from person to person, depending on their cancers and their ability to cope with the therapy. Research by Macmillan and other cancer charities found that one in four of the 2 million people in England alone living with and beyond cancer today face disability or poor health following their treatment. It is not uncommon for a cancer patient still to be reporting pain and extreme fatigue long after their treatment has ended. Many of them will be unable to work as a result. To suggest that these people should be treated in the same way as jobseekers who are fit and able to work cannot be, and is not, right. It is uncompassionate and uncaring.

I am concerned that the Government’s proposals fail to recognise a clear distinction between those on jobseeker’s allowance who are available for, seeking and able to engage in work and those on ESA in the WRAG who have been independently medically assessed as being too ill to work. Most cancer patients want to get back to work. They see that as a recovery from their illness, so they wish to work.

The Government have stated that this move is about providing an incentive for people to return to work, no matter what their condition. However, I have yet to see any evidence to suggest that this is needed, let alone that it will work. If I am wrong, I have no doubt the Minister will correct me with the evidence that he has. What people who are ill need is enough time and the right support to recover and get well. They do not need to be penalised for not recovering quickly enough.

Let me give an example that many of your Lordships may have seen. Stacie, a 43 year-old in remission from leukaemia, recently wrote an article in a leading daily newspaper about her experience of having cancer. She said:

“Throughout it all, I wanted to work. I am still desperate to return to the classroom. My hospital room was wallpapered with cards and pictures from my students and fellow teachers. When I was struggling, I only had to glance up to see the gallery I’d created of children’s artwork. Those crayon suns and stars brightened a very dark time in my life. The idea that I’d need to be further impoverished to be incentivised to return to teaching is not only ludicrous, it’s insulting”.

Stacie’s doctor told her that, because of the effect that cancer and depressed immunity had on her immune system, teaching was for her now,

“more dangerous … than police work”.

This comment highlights what I fear that the Government have failed to consider in their proposals. In order for people with long-term illness, physical or mental, to return to work without further risk to their physical or mental health, they need the right support, and they need time. They should not feel pressurised to return to work before they are mentally and physically fit enough because of financial worries. Doing so could have a significant negative effect on people’s physical and mental health. People could actually require longer-term welfare support: the exact opposite of what the Government are seeking to achieve.

I wonder what, if any, assessment the Government have made of the potential knock-on costs and implications for both the health and benefits systems if people who have been medically assessed as being too ill to work return to work too soon and their health deteriorates as a result. I spoke about people living with cancer, but, as I mentioned, it is not just people with cancer but others with long-term disabilities and other illnesses.

I welcome the fact that no current claimants will lose money, but that will provide no comfort to those who will be placed in the WRAG after April 2017. I, like many noble Lords, welcome the Government’s commitment to provide extra investment in employment support for those in the WRAG. I look forward to the Minister’s outlining more detail about this. If not, then there is a risk that the Government’s proposals will inadvertently move people further away from the labour market as people already too ill to work are made even more ill.

There is a clear link between financial difficulties and poorer health. Four years ago, I was accused of not understanding the need to reduce costs. I said then, and I repeat it now: I clearly understand the need to balance the books. However, it is not compassionate, caring, or a mark of a civilised society to do so by making the sick poorer and sicker.

I know that the noble Lord, Lord Freud, who I know from my previous experience does care, will look at Clauses 13 and 14 particularly in relation to this group of people who are suffering or recovering from cancer, and suggest a way of mitigating the effects of these proposals. I look forward to his comments.

Health: Neglected Tropical Diseases

Lord Patel Excerpts

Thursday 6th February 2014 Grand Committee

[Lord Patel (CB)]

My Lords, I declare an interest as a chancellor of the University of Dundee, which has a drug development unit that focuses on finding treatments for five of the key neglected tropical diseases—human African trypanosomiasis, Chagas disease, visceral leishmaniasis, malaria and tuberculosis—and which has only recently announced a potential drug for the treatment of malaria.

However, today I wish to speak not about drug development at Dundee—fantastic though it is—but, in the few minutes that I have, about why a focus on neglected tropical diseases should be given priority in women’s health and gender equality in the millennium development goals post 2015, alongside HIV/AIDS, nutrition, access to contraception and poverty reduction.

I shall speak specifically about two helminth infections—hookworm infections and schistosomiasis. These are the two key infections affecting women living in poverty in Africa and elsewhere today. Nearly 40 million women of childbearing age and 7 million pregnant women per year are infected, leading to increased maternal, neonatal and infant mortality, not to mention increased morbidity. Further, more than 10 million women suffer from genital schistosomiasis. Apart from causing much pain and distress, this condition also is linked to horizontal transmission of the HIV/AIDS virus and is a possible major factor in the AIDS epidemic. Hence, it is important for the control of HIV/AIDS, particularly in Africa.

It is believed from research carried out that highly vascular and CD4+ cell-enriched patches in the cervix or elsewhere in the female genital tract may provide host entry routes for sexually transmitted HIV, although other mechanisms are plausible. There is an urgent need for expanded studies. If this is shown to be true, it would be a major case, allowing millions of young women who are infected to control HIV/AIDS. Such findings are therefore critical for designing potential intervention strategies of the future.

A recent publication by Hotez and Whitham in the American Journal of Obstetrics & Gynaecology—I am an honorary fellow of the college—highlights in detail the problems and the solutions. An urgent expansion of mass drug administration, not only to children but to women of childbearing age, for the eradication of hookworm and schistosomiasis is needed. Current programmes hardly reach a third of the children in Africa and less then 10% of young girls, particularly women. Millennium development goals post 2015 should include new policies and advocacy of neglected tropical diseases, including the elimination of helminth infection, which is possible, and better alignment. Control of these infections to HIV/AIDS and malaria control is what is required, hence the need for the inclusion of neglected tropical diseases in the millennium development goals post 2015. I hope the Minister will ensure that the UK will support that.

Queen’s Speech

Lord Patel Excerpts

Tuesday 14th May 2013 Lords Chamber

[Lord Patel]

My Lords, it is a pleasure and a privilege to be asked to speak after the noble Viscount, Lord Ridley. Most noble Lords may not know that this is his third attempt to make his maiden speech. It is also the third time that I have been placed to speak after him. On the previous two occasions, the debates were cancelled. Therefore, he is lucky today and we are lucky to hear him.

Today, the noble Viscount spoke about energy but he could have spoken equally well on literature, political philosophy, the economy, science and even banking. Of course, he is the latest recruit to the Eton and Oxford club, which is growing in the Houses of Parliament. However, to me he is well known for the books that he has written, including those on science, particularly genomics. He has produced well written theses on genes and chromosomes, which people can follow easily.

The noble Viscount’s books have sold millions of copies and have been translated into 30 languages. They have won many awards, including the New York Times award for the 10 best books of the year. So far his TED lecture has had more than 2 million followers. It beats the records of other lecturers such as Bill Clinton, Bill Gates, Jane Goodall and many Nobel Prize winners. I wonder why his TED lecture has had more than 2 million followers. The subject of his lecture was “When ideas have sex”; I wonder if it is the word “sex” that is attracting them.

We look forward to many more contributions from the noble Viscount. It was a pleasure to listen to him and I congratulate him on his maiden speech.

I turn now to my meagre contribution to the debate on the gracious Speech and I will briefly speak about the Care Bill. I congratulate the Government on bringing it forward, on their ambition to create a system in which everyone can get the care they need and on including in the Bill rights for carers. It is landmark legislation on the path to a fairer system. I say “on the path to a fairer system” because the proposals alone will not solve the serious challenges of funding social care and the growing gap between funding and increased demand. Similarly, I wonder whether the Government think that the £150 million allocated to support the rights of carers is likely to meet their needs.

There is also a need to address a gap in the support that currently exists, for instance, for patients with cancers. While the Bill places a duty, and quite rightly so, on local authorities to identify the needs of carers, for cancer patients such responsibility also needs to include health bodies, both to meet the needs of carers and to achieve integrated care, which I know is the Government’s ambition. I ask the Minister whether it remains the Government’s commitment to implement free social care at the end of life, a time that a person with cancer is most aware of. While they need healthcare, they also need social care but are not themselves aware of which care they need. Healthcare is free while social care has to be paid for. Any assessment that a person is required to undergo will cause delay and therefore deny them the care. No doubt, as we enter the legislative period next week on the Care Bill, we will have an opportunity to debate and discuss these and other issues. I look forward to that.

I now turn briefly to my disappointment at what is not in the gracious Speech. As other noble Lords have mentioned, the Government have missed an opportunity to introduce legislation on public health issues, particularly in relation to the plain packaging of cigarettes and tobacco material and the minimum pricing of alcohol. I add to that any strategy for the reduction of obesity. One-third of children in our country under the age of nine are now obese, and nearly a quarter of adults are obese. We need a strategy, including for food labelling, that will reduce the consumption of sugar, fat and salt. I am disappointed that there is no strategy in any legislation referred to in the gracious Speech on public health matters. Can the Minister say whether the Government intend to bring forward legislation relating to public health issues in the future?

Disability Services

Lord Patel Excerpts

Thursday 10th January 2013 Lords Chamber

[Lord Patel]

My Lords, I am pleased to have the opportunity to speak in this debate and I thank the noble Lord, Lord Boateng, for initiating it.

When I read the well-researched report produced by the charity Scope, and several others that I have looked up, and the many obstacles that disabled people in the black and minority ethnic communities have to face, it led me to reflect back to the days of discrimination based on colour, how long it took for us to address the issue and the legislation required to get rid of it.

Studies now show that people with disabilities—black, ethnic minority and white—face similar discrimination, but those from black and minority ethnic communities face further discrimination based on a lack of understanding by those who commission and provide services. Other noble Lords have already mentioned examples, such as the need for better and appropriate communication, the lack of understanding of the stigma attached to disability in some cultures, health services both for physical and mental health, and the failure to understand the differing needs of black and minority ethnic people with disabilities.

We have heard on several occasions in this Chamber how people with disabilities are discriminated against, particularly from the noble Baronesses, Lady Campbell of Surbiton and Lady Grey-Thompson. The noble Baroness, Lady Grey-Thompson, described how she becomes invisible when trying to get a taxi or catch a bus, despite being one of the most recognised faces in the land.

The Scope report findings confirm that there is discrimination against people with disabilities in black and minority ethnic groups. It says:

“We found little evidence of direct racism in service provision and encountered no reports of staff being explicitly discriminatory. We did find evidence of discrimination on the grounds of disability … Consistent low-level discrimination can have a serious impact on people’s wellbeing. Non-discriminatory practice is about more than accommodating cultural preferences”.

The Scope study also identifies several issues relating to health—issues that commissioners and providers of health services should be aware of, and I hope that the Government will make sure that the Department of Health notices this report. It goes on to state that,

“black and minority ethnic disabled people are … less likely to access healthcare services. Evidence shows that they suffer from poorer health, have a shorter life expectancy and yet are less able to access care than the majority white population. Despite large amounts of research, and a variety of local and national strategies for change—including the … Delivering Race Equality in Mental Health initiative introduced in 2005—these problems remain.

Research … indicates that only a minority of the Pakistani and Bangladeshi disabled people … interviewed had had any contact with hospitals, physiotherapists, and specialist care”.

The only people who fare well in the report are GPs, who,

“provide a notable exception to this trend, and numerous studies report that GP surgeries provide a key access point to services for BME people … Yet there is … evidence to suggest that … prejudices are alleviated by close contact with medical services. Indeed, western medical paradigms may provide some relief from stress for families burdened by feelings of shame or stigma”,

in some cultures. The report also notes several recommendations for commissioners and providers of health, and, as I said, I hope that the Government will take notice of them.

I should now like to devote a few minutes to allude to the problems faced by black and minority ethnic families with a severely disabled child. Before I do so, I declare an interest as a trustee of the White Top Foundation, which over the years has given tens of millions of pounds to make life better for families with a severely disabled child, and to care for these children. I am pleased to say that this charity continues to carry out this work.

The study I will refer to was funded by the Joseph Rowntree Foundation and was carried out by the University of York and the University of Bradford. It used the same methodology that it had used to study white families with severely disabled children. The findings, which were quite salutary, were as follows:

“Families from ethnic minority groups experience even greater disadvantage and difficulties in caring for a severely disabled child than their white counterparts”.

The study was,

“based on interviews with 600 ethnic minority parents of severely disabled children”,

throughout England, and, as I said, it was carried out jointly by researchers at the two universities. They found that:

“Most families had net incomes below £200 a week. Those experiencing the greatest economic disadvantage were lone parent families—a group that included two out of three Black African/Caribbean families … Levels of employment were low, including three out of four mothers who had no work … Fewer parents were receiving Disability Living Allowance or Invalid Care Allowance compared with white families previously surveyed. Although all the ethnic minority parents interviewed were caring for a child with severe disabilities, they were less likely to have been awarded benefit at the higher rates. Parents who understood English well had much higher levels of benefit take-up than those with a limited understanding. Among one in three Asian parents who said they needed translation help when talking to health and social care professionals, a large minority had not been provided with an interpreter. There was little evidence to support stereotypes—

which often develop among social workers—

“suggesting that ethnic minority families generally benefit from extended family support”.

The study found that,

“Fewer mothers received practical and emotional support from partners than white counterparts … Ethnic minority parents reported that their disabled children had many more unmet needs than white families in the earlier survey. Half identified seven or more areas where they needed more support than currently provided. This included help with their child’s learning, communication and physical abilities, access to leisure opportunities and learning about culture and religion”.

As Professor Waqar Ahmad, who was co-author of the report, said:

“We know from the previous national survey that financial difficulties, unmet needs and inadequate support networks are common problems among families who care for severely disabled children.

But this research reveals that there is an added depth and intensity to the problems faced by ethnic minority families which policy makers must take on board as a matter of urgency. Poor communication with professional care services, lack of recognition of parents’ needs, as well as lack of support and high levels of economic disadvantage, have left too many of these families living ‘on the edge’”.

My question to the Minister is: will the Government’s disability strategy include implementation plans involving all the various government departments, and how will the implementation be monitored?

As noble Baronesses speaking in this debate outnumber noble Lords by three to one, I dare say that women in all communities are more likely to be carers of disabled children. However, for BME women, the experience of social isolation is disproportionately high. Reducing social isolation can be achieved through greater community involvement in the design, commissioning and delivery of services. What steps will the Government take to enable greater community involvement, particularly of BME groups, in the co-design, commissioning and delivery of services?

Health: Needlestick Injuries

Lord Patel Excerpts

Tuesday 12th June 2012 Lords Chamber

[Lord Freud]

My Lords, it is important to make health and safety proportionate. This is a very particular problem. People cut themselves regularly. However, the issue is not that you cut yourself but that you infect yourself. The numbers are rather small, and it would be disproportionate to widen this out further than the directive because we already have well established safety procedures that are applicable more generally.

[Lord Patel]

Can the Minister clarify the employment status of people who are HIV carriers? As I understand it, the new regulation allows people who are carriers of HIV to work in the health service, including as surgeons.

[Lord Freud]

My Lords, I am outside my personal sphere of expertise on that particular question. I will have to write on that matter.

Welfare Reform Bill

Lord Patel Excerpts

Tuesday 14th February 2012 Lords Chamber

Moved by

[Lord Patel]

As an amendment to Motion F, at end insert “but do propose Amendment 18B as an amendment in lieu”,

18B: Page 36, line 35, at end insert—
“( ) In calculating for the purpose of subsection (1) or (2A) the length of the period for which a person is entitled to a contributory allowance, days in a period during which a person is receiving treatment for cancer or suffering from the effects of treatments for cancer are not to be counted.”

[Lord Patel]

My Lords, before I start, I would like to record my most sincere gratitude to the Minister for the courteous way in which he has engaged with me on many occasions to discuss all my amendments, but particularly this one. I found that our meeting was courteous, and he showed a clear understanding of the issues, so I thank him for that.

I was, of course, disappointed that the other House decided to overturn my amendment, particularly one that I thought was fairly modest, as Amendment 18 simply sought to protect cancer patients from the impact of time-limiting employment and support allowance. If the impact of the time-limiting proposal on cancer patients is to be mitigated, the Minister’s words in his summing up today will be of particular interest.

During the previous debate I indicated very briefly what it is like for patients to be on chemotherapy for prolonged periods of time, sometimes for as long as two years. I could not do enough justice to the description of how a patient feels, so I would rather use the actual words of a patient.

Jenni Russell, a reporter, wrote an article in the Sunday Times, and she had this to say:

“Everyone knows that cancer patients are likely to spend a lot of time being made to feel really … ill … I almost died of malaria in my twenties”—

I had malaria in my teens, and I can still remember what it felt like—

“but I have never felt as appalling as I did on chemo. The point of chemotherapy is to load the body with sufficient poison to kill the cancer without … killing the patient. It is crude medicine and, because we understand so little about genes or cancer pathways, it is unpredictable. I had assumed I would overcome it with a bit of willpower. Instead I had vomiting, nausea, headaches, muscle weakness and an inability to tolerate bright lights. For the first four days in every fortnight’s treatment, I couldn’t eat, speak, read, listen to the radio or get out of bed. My white blood cell count sank so low that I needed injections to boost my bone marrow production. For the next six days I was too weak to want to walk upstairs. There was no fight left in my body. … I could not conceivably have held down an ordinary office job over those months”.

This is despite the fact that she had had a lot of support. She goes on:

“The fact that working was a choice, not a fearful necessity, made a huge psychological difference. … I have no problem with the principle that people who can work should work”.

I think she is right. The vast majority of people with cancer who are out of work because of their condition want to work. For cancer patients, getting back to work is a crucial step forward in getting their lives back after cancer, but people with cancer often experience debilitating physical and psychological effects from the disease and its treatment. As I have described, these can be quite severe. For the majority of people with cancer who need ESA, 12 months is simply not long enough to return to work.

We hope there is consensus that cancer patients awaiting and undergoing cancer treatment should be in the support group. The Minister already referred to this, and I am grateful for that. I understand that following my discussions with the Minister and others, the Government are in discussions with Macmillan about how this process can be reviewed. Progress is being made, and I appreciate that very much. However, the primary concerns about the impact of time limiting on cancer patients have been that those who still experience the long-term effects of treatment will lose their benefit before they are ready to return to work. I hope the Minister will say something about that.

I am glad, however, that the Government are seeking to ensure that these people are given more time in the support group, where they will not be impacted by the time limit. If we are to protect cancer patients who are suffering from the debilitating side-effects of their treatment through the work capability assessment, it is crucial that the views of healthcare professionals—the oncologists, the GPs and the specialist nurses—are taken on board, and their evidence ought to suffice.

I hope that the Minister will refer to that. Patients often deteriorate after treatment is completed, hence my amendment, which says that those suffering from the effects of treatment should not be included. A system would be based on the presumption—and that word is important—that the cancer patient leaving the treatment phase would remain in the support group of the benefit if they needed it. Evidence from a healthcare professional would consist of confirmation that the cancer patient continues to experience side effects that limit a claimant’s capability to work, and therefore should be placed in the support group. I agree that this assessment could be reviewed after a suitable period—even after six months—to see how the claimant’s situation has changed.

I therefore sincerely hope that the Minister will be able to think of ways of meeting this amendment, and I look forward to hearing them.

[Baroness Morgan of Drefelin]

My Lords, I support the Motion of the noble Lord, Lord Patel, and in so doing I remind the House of my interest as chief executive of Breast Cancer Campaign. In particular I congratulate the noble Lord, Lord Patel, on pursuing his amendment and on articulating so clearly the concerns of cancer patients. I also congratulate Macmillan on the work that it has been doing very determinedly to raise these important issues on behalf of cancer patients, and I thank the Minister for listening and for being very careful in his response, as I am sure he will be.

I do not want to repeat the arguments that have already been made in this House on Report, but I would like to be very clear that I believe this House has made its intention very clear—with an alternative amendment—on the need to provide cancer patients with the security of having treatment without the pressure of potentially losing their benefit added to it, an issue that I suggested here today and that I would like to hear from the Minister on.

I would specifically welcome hearing from the Minister about the position of cancer patients who, by April 2012, will have been in the work-related activity group for 12 months. Will he clarify for us, in the light of his new thinking, whether this group of patients will no longer be eligible to receive contributory ESA? I know that the Government are consulting, and I understand that the Minister will not want to pre-empt the outcome of that consultation, but it would be very helpful for those who have received notice that their benefit will come to an end after 12 months to know, as cancer patients, what their position might be.

[Lord Avebury]

My Lords, perhaps I may intervene briefly and question the noble Lord, Lord Patel, about the breadth of his amendment. He spoke about those people who are receiving treatment for cancer and described vividly the ordeals that they go through when receiving chemotherapy. Of course, we all have knowledge of that kind of treatment, not from personal experience but from our relatives and friends who have been through those procedures. But not every cancer patient has to be given chemotherapy or radiotherapy. Some cancers can be treated with medication. I was speaking particularly about myeloproliferative disorders, which can be treated in the early stages with medication.

The wording of the amendment as regards “receiving treatment” is too broad and should be confined, for example, to those receiving chemotherapy or radiotherapy. In that way, the provision would be limited to those people who are so physically affected by the treatment that they are receiving that they would be incapable of working or unlikely to be capable of working until that treatment ceases.

[Lord Patel]

My Lords, it is true that some cancer patients may not need any treatment after surgery. But many others need therapy and my amendment refers particularly to those who cannot work because of their treatment or their suffering from the effects of the treatment. My key point is that those people want to work. As Jenni Russell said in her article, they are not skiving. They want to work. If the amendment is defective in that area, the purpose is not.

[Lord McKenzie of Luton]

My Lords, when our amendments were considered in the other place, the Minister, Chris Grayling, emphasised that the scope of the support group had been increased for cancer patients and that the consultation, following work with Macmillan Cancer Support and Professor Harrington, carried a presumption that someone with cancer will be in the support group. In an exchange with my right honourable friend Stephen Timms, the Minister also confirmed that it was planned to have a simple system that enables a medical professional to indicate whether someone has sufficiently recovered to make a return to work. That obviously is to be welcomed. It clearly goes with the grain of the amendment in lieu in the name of the noble Lord, Lord Patel, which has our support. He has set out the arguments clearly and the support of noble Lords would bring relief to up to 7,000 people who have or have had cancer.

We recognise that the Minister cannot pre-empt a consultation, but we hope that the Government can accept the thrust of what the noble Lord, Lord Patel, proposes. If he cannot, we hope that the noble Lord will test the opinion of the House. Bringing relief to some 7,000 cancer sufferers is a worthy endeavour. Of course, it does not of itself provide help to the hundreds of thousands who are adversely affected by the arbitrary time limit in contributory ESA but that should not prevent us bringing some relief to this group where that is possible.

--- Later in debate ---

[Lord Freud]

My Lords, I need to start by paying tribute to the noble Lord, Lord Patel, who has done some astonishing work in this area in bringing the issues vividly to life. We certainly have learnt and have appreciated some of the things that he has said. I hope that I will be able to give him and the House some reassurance about the progress we have made on this.

As noble Lords will know, we are committed to improving the WCA so that it accurately identifies the individuals who should be in the support group where there is no time limiting and no questions. That is why we asked Professor Harrington and Macmillan Cancer Support to look at the way in which individuals being treated for cancer are assessed. That is why we have proposed changes and those changes are what we are consulting on now.

The intention of our proposals is to introduce a presumption that most people being treated for cancer should be in the support group unless the evidence indicates that, exceptionally, the debilitating effects of treatment are likely to be more limited. We would expect this to increase the number of individuals going into the support group and to reduce the number of people called to attend a face-to-face assessment. We have been working closely with Macmillan Cancer Support as part of the consultation and to understand if, following the consultation, there are further areas where improvements need to be made.

I can report to noble Lords that our discussions with Macmillan Cancer Support have been constructive. As a result we have reached agreement in the following three areas, which I hope will deal with some of the searching questions raised by the noble Lord, Lord Patel. First, we have agreed that following the consultation we will work with Macmillan Cancer Support to develop the detailed guidance that underpins the regulations. Our aim is that the guidance should clearly specify the evidence required from a healthcare professional that would confirm presumption and allow immediate access to the support group without a face-to-face assessment. In our initial discussions we have agreed with Macmillan Cancer Support that evidence would be accepted from an oncologist, a GP or a specialist cancer nurse.

Secondly, we have agreed to review the guidance and process for people who are in the work-related activity group but whose condition deteriorates or relapses during the course of treatment so that they can access the support group quickly and smoothly. We would expect this to speed the process and reduce the need for face-to-face assessments. Thirdly, we have agreed with Macmillan Cancer Support to review the guidance for people who are in the recovery period following cancer treatment. That will ensure that individuals can remain in the support group for as long as appropriate during their recovery. Combining those three proposals will greatly improve the way we assess and support individuals suffering from cancer and reflect the particular challenges they face as a result of both the condition and the treatment.

As a result, we would expect that the majority of cancer patients are likely to be placed in the support group for the first six months while they undergo treatment. Following this, many are likely to have a further period in the support group while they recover from the residual effects of treatment. It could easily be up to a year therefore for many people with cancer before the clock starts running in relation to time-limiting. I know that the chief executive of Macmillan Cancer Support has welcomed these proposals and we look forward to working with his organisation following the consultation to help implement our proposals and to support people with cancer, where appropriate, to return to work.

Finally, in response to the noble Baroness, Lady Morgan, on the WRAG, we are looking at this in the round and it would be unwise to pre-empt the consultation. But, clearly, we would want to be in a position where those in the WRAG are genuinely able to do work-related activity. As I have said, we now presume that most people will end up in the support group for an extended period. On the basis of what I have said, I hope that the noble Lord, Lord Patel, will feel able to withdraw his amendment.

[Lord Patel]

My Lords, I thank the Minister for his very positive response. Like the noble Baroness, Lady Morgan, I pay tribute to the work Macmillan Cancer Support has done for cancer patients. To summarise, the Minister has been clear in accepting that the WCA assessment will be improved, that there will be a presumption that cancer patients in treatment will be in the support group, that discussions with Macmillan will continue following the consultation, and that guidance will be developed based on evidence from healthcare professionals to allow cancer patients either to remain in the WRAG or to go into the support group. He has also agreed to review guidance for patients in the WRAG so that if they deteriorate they can access the support group and to review guidance on the period of recovery following treatment. I have to say that it must be quite unusual to be content with the outcome on amendments on two successive days before two different Ministers. I thank the Minister very much for his summation. Cancer patients will be relieved. I am happy to withdraw the Motion.

Motion F1, as an amendment to Motion F, withdrawn.

Welfare Reform Bill

Lord Patel Excerpts

Tuesday 31st January 2012 Lords Chamber

[Lord Patel]

My Lords, on a point of order, will the Minister confirm that we cannot amend regulations? He has asked us to give them consideration and committed to bringing them back, but whatever he brings back will have to be either accepted or rejected.

[Lord Freud]

My Lords, I hope that noble Lords by now have got a flavour of how I try to work with them. I listen and I take on board what people say. I will aim to shape the regulations in the light of that. I am more than happy to—

Welfare Reform Bill

Lord Patel Excerpts

Wednesday 11th January 2012 Lords Chamber

[The Parliamentary Under-Secretary of State, Department for Work and Pensions (Lord Freud)]

My Lords, I speak in support of the amendments tabled by the Government in relation to Clauses 51 and 52—namely Amendments 33, 34, 37, 39, 40, 41, 43, and Amendments 63 to 67.

The important issue of the impact of time limiting on those with deteriorating conditions was raised in Grand Committee. I outlined in debate the existing safeguards which would protect people in these circumstances. However, when we looked again at the safeguarding provisions, it was clear that a person would be able to requalify only in very limited circumstances. In light of that helpful debate, we have decided that further clarification should be provided on the face of the Bill and are therefore moving these amendments.

The government amendments will enable people whose contributory ESA, while in the WRAG, has ceased as a result of time limiting, to requalify for an award of ESA if, after their award ends, they continue to have, or are treated as having, limited capability for work, and—I stress this point—at any time thereafter they develop and continue to have limited capability for work-related activity and would become eligible for the support group. The substance of this new category of entitlement is found in Amendment 43, which provides for claimants to have further entitlement after time limiting has been applied to an award of contributory ESA. I note with pleasure that the noble Lord, Lord McKenzie, and the noble Baronesses, Lady Morgan and Lady Meacher, have added their names in support of Amendment 43.

Without wishing to anticipate or foreshadow the debate on Amendment 42, tabled by the noble Lords, Lord Patel and Lord McKenzie, I trust that the noble Lord, Lord McKenzie, having lent his support to Amendment 43, may feel able not to proceed with Amendment 42. I shall endeavour to explain why shortly.

I turn to the remainder of the government amendments in this group. In previous versions of the Bill, the time-limiting provisions for ESA youth appeared in Clause 52. As a result of the amendments, we have moved to provide for new entitlement to contributory ESA through deterioration, and it has been necessary to amend how the time limiting of ESA youth awards will work to provide for the new deterioration category. This is because we wish the category of further entitlement to ESA after deterioration to cover both claimants who deteriorate after their time-limited contributory ESA awards end and claimants who deteriorate after their time-limited ESA youth awards end. We have therefore moved amendments to provide for Clause 51 to deal with the time limiting of ESA youth awards where a claimant is in the work-related activity group. To be clear, the clauses as revised by the government amendments still have the effect that claimants awarded ESA on grounds of limited capability for work developed during youth will have their awards time limited, if the claimant is not in the support group.

Amendment 42 is similar in a number of respects to Amendment 43, and I think I can probably say was the inspiration in an earlier form for that amendment. However, the point is that Amendment 42 is less favourable than Amendment 43 in one important respect, as it states that a claimant must be assessed as having limited capability for work-related activity within five years of the termination of the first ESA award. The approach taken by the government amendments would not seek to put this time limit on the new form of entitlement to ESA for claimants whose condition deteriorates. We would allow a claimant to return to a contributory ESA award at any time after their time-limited award has ended, as long as they develop limited capability for work-related activity or fall to be treated as having it, and as long as they have continued to have or be treated as having limited capability for work throughout the period after their time-limited award ended.

On this basis, I trust noble Lords will agree that Amendment 43 and the supporting government amendments provide a more generous approach than would be provided by Amendment 42. I beg to move.

[Lord Patel]

My Lords, I speak to Amendment 42, to which the Minister has just referred. Before I start, perhaps I might wish him a happy new year and, in doing so, thank him enormously for his Amendment 43. It may be claimed that it was in response to my amendment in Grand Committee; if so, I am very grateful for it. I thank him and I do not need to go any further.

[Baroness Meacher]

My Lords, I support Amendment 43, tabled by the noble Lord, Lord Freud, and I also wish to congratulate him on levering a little money out of his Government, or the Treasury, to enable that amendment to be tabled. However, I also want to speak to my Amendment 42A, rather late in the day, which seeks to introduce just a little more humanity into this part of the Bill. It simply extends a little the remit of Amendment 43.

At present, a claimant who has a terminal illness and who is expected to live no more than six months would be placed in a support group, which means that they would have no conditions attached to their benefit entitlement. If they have a few good days when they might be able to work, there is no commitment for them to have to do that although anyone in this position who has a job will no doubt wish to work as far as they possibly can. I am talking about those people who do not have a job and who therefore find themselves in the position of having to look for one, when they have a terminal illness that will deteriorate over time until they finally die.

This amendment applies to a group of people who are suffering from a life-threatening disease, the symptoms of which cannot be controlled by any recognised therapeutic procedure, and where there is reasonable cause for these symptoms not to be able to be controlled by any such procedure. At present, the default position is that these claimants will be allocated to the work-related activity group and will be expected to undertake interviews and activities on this rather wild and ridiculous assumption that they should be finding a brand new job, with a brand new employer, for whatever little bits of time they are able to function. At the same time, of course, they have to prepare themselves mentally for the ever worsening symptoms that will lead to their death.

My question to the Minister is whether he regards such expectations of persons on a downward path towards death as humane and reasonable. I hope very much that he will answer that question rather carefully in his response, in the sense that having accepted the government amendment and put that forward, he will find that this amendment is a very minor shift which brings people in a rather similar position into line. Again, I must emphasise that this amendment would not in any way discourage terminally ill people who can work from doing so. Rather, it is an attempt to remove callous pressures from being applied to people who already have probably far too much to cope with.

The Minister knows that I understand very well the need to reduce the numbers of people on ESA and, most particularly, to reduce the months and years that some people remain on it. We are really of one mind on that. Of course, proper conditions need to be applied so that if people are really sufficiently well to work, they make every effort to do so. However, we are talking about people whose lives are severely curtailed. They will not be around to spend years on ESA, let alone to claim pensions. Are we not in danger of throwing the baby out with the bathwater here?

I shall leave your Lordships with just one case to illustrate the point. A CAB client had had major surgery for breast cancer, twice. At the time of her assessment for benefit she was suffering severe pain and undergoing tests that revealed some abnormal bone activity. She told the HCP about her condition and the fact that she was due to have a further scan. This lady was found to have metastatic non-curative cancer of her bones, primarily in her pelvis, hips, back and spine, as well as down her legs and in the rib area. She was told that she had three or four years to live, although I have to say that sounds a little unlikely to me, and my guess is that it will be a pretty miserable three or four years.

On appeal, this claimant had her “fit for work” status—which is mind-boggling in itself—removed, but she was placed in the work-related activity group. She became very tearful and had to see a psychologist. She was unable to return to her previous job due to pain from the operations removing the lymph glands under her arms. She got extremely tired, of course—if you have metastatic cancer you are not going to be in a good way to do anything. The CAB adviser was of the view that this client would not be able to work again due to the increasing pain levels that she was going to suffer.

Anyone who has known anyone with metastatic bone cancer will know that this is not a happy thing to have; it is seriously deleterious. That is the point that I want to make: here you have people whose pain, tiredness and general debility cannot be adequately controlled, and there should be some fairly automatic procedure to deal with them. Perhaps the Minister could consider the position of a potential employer. Who would take on an employee with metastatic bone cancer? I have to say that I would not. How reliable would such an employee be, and for how long—for how many days or weeks at a time? Who knows? The prospects, though, are pretty poor.

This client will have to go through the humiliating and endlessly negative experience of writing applications and going for interviews, knowing in her own mind that employers, if they are half sensible, simply will not take her on. It is that aspect that we need to get hold of. Also, she could be accused of wasting employers’ time: why should they be reading these applications and interviewing her when, poor soul, she really is not in a fit state to work?

Noble Lords have mentioned in previous debates that terminally ill claimants will be saving taxpayers substantial amounts of money because of course they will not be living for decades with dementia, as people like myself might be doing. All we are looking for is dignity in those last months and, if they are lucky—although perhaps this might not be lucky after all—years before they die. As the Prime Minister said in his first party conference speech as Prime Minister,

“people who are sick, who are vulnerable, the elderly—I want you to know that we will … look after you. That's the sign of a civilised society and it's what I believe”.

We are really not talking about a lot of money here. I hope that the Minister will consider this matter.

--- Later in debate ---

[The Earl of Listowel]

My Lords, I put my name to Amendments 36A and 46, to which my noble friend has just spoken so eloquently. I strongly support them. Young people with a severe congenital disability, or a severe disability developed early in life, merit contributory employment support allowance; it should not be removed from them. Noble Lords who are acquainted with families who have disabled children will know of the appalling difficulties they face when their child makes the difficult transition to adult services. It is particularly important that such disabled young people have financial support because the transition to adult services is often very poor.

Vital to a safe transition is a social worker, who can be a powerful advocate for a child and their family. However, what does one hear again and again from such families? Their social worker continually changes, the parents have to keep rebriefing the social worker on their child's needs, and there is no continuous and strong advocate for the child.

We should consider another group. As vice-chair of the parliamentary group for children in care, I know of the high rates of disability among children taken into public care. There must be absolutely no erosion of financial support for these children as they leave care. Amendment 46 would ensure that this erosion would not happen.

I am most grateful to the Minister for his helpful letter to the Convenor. I recognise that retaining contributory ESA for this small group of very vulnerable young people would be somewhat inelegant. I also recognise the concerns that my noble friend raised about the European judgment. However, I hope that the Minister may be able to help in this area, given the particular needs of this vulnerable group. I also hope that my noble friend will press this matter as far and as hard as she can.

[Lord Patel]

My Lords, I speak to my Amendment 45, which takes a much more radical view and proposes leaving out Clause 52. I guess the happiness will end now. However, I take note of the comments made by the noble Baroness, Lady Meacher, about the anxiety over abuses in the system, and I will listen carefully to the response from the Minister, because it is an important issue. I agree with the noble Baroness that it will not be worthwhile pressing any of the amendments if the Minister’s response is that there is a need to reconsider matters in the light of our comments.

I will outline the reason for my suggestion that we leave out Clause 52 by exploring historically why youth ESA was set up. Under the provisions, a person under the age of 20 who is not in full-time education or who has had a limited capability for work for 196 consecutive days can gain entitlement to contributory ESA despite not having reached the contributions threshold. This measure has existed in some form in the benefits system for nearly 40 years to enable young people to access contributory benefits if they are unable to work because of illness or disability.

The youth rules were introduced for incapacity benefit in April 2001 as a result of provisions in the Welfare Reform and Pensions Act 1999. They were intended to refocus benefits on people disabled early in life who had never had the opportunity to work and gain entitlement to incapacity benefit through the payment of contributions. The rules were carried over into ESA as part of the Welfare Reform Act 2007, again to ensure that young people who had not had the opportunity to build up a sufficient contribution record would not be excluded from the non-means-tested allowance.

With the Welfare Reform Bill the Government now intend to abolish the youth condition, as well as time-limiting its receipt to 12 months for existing claimants. The justification for this change, as set out in the impact assessment, is that it,

“will simplify the benefits system and ensure a consistency of treatment for those claiming ESA”.

This assessment completely fails to recognise that young people with long-term health conditions or disabilities are already in a place of disadvantage in comparison with older adults, hence the introduction of the youth condition in the first place, and that this change will entrench this disadvantage. This will mean that young people, including those unable to work because of cancer, will be extremely unlikely to be able to access the contributory element of ESA and will have recourse only to the means-tested income-related element to be subsumed into universal credit. Young people who are ineligible for the income-related component, which will include those with a partner who works more than 24 hours a week and full-time students, could therefore lose up to just under £100 a week. This will have a devastating impact on those who are unable to work and are struggling with the significant additional costs of a cancer diagnosis—and, believe me, there is a significant cost for all kinds of reasons once cancer is diagnosed.

The eligibility of young people for benefits is extremely dependent on their circumstances and particularly on their education status. I have serious concerns about how students, for example, are treated under the system. Full-time students are able to claim income-related ESA only if they are already in receipt of DLA. This is another example of how the eligibility rules at present disadvantage young people. I am also concerned about the knock-on effect of many young cancer patients who are students becoming ineligible for DLA as a result of the introduction of PIP—and we will discuss that later. I believe it is critical that the Government ensure that the eligibility of students with long-term health conditions and/or disabilities for ESA is not dependent on their receipt of DLA.

Let me give an example. David was diagnosed with stage 4 Hodgkin's lymphoma when he was 22. Before he was diagnosed, he received a full wage working for the NHS that stopped when he was undergoing treatment. As he had been working for his employer for only six months, he was entitled to three weeks’ paid sick leave. He was subsequently unable to claim any benefits, including ESA, because he was forced to move back home with his parents. David told me: “It can be really difficult for young people to build up time with one employer so that they are entitled to sick pay at full pay”. Similarly, it is extremely difficult for young people to build up national insurance contributions, so I am thankful that at present the youth rules enable young people, including those with cancer, to access contributory ESA, which can be a lifeline when they are already impacted by a loss of earnings.

DWP statistics show that 17 per cent of the current caseload of ESA claimants aged 16 to 24 are currently accessing contributions-based ESA, or both income and contributions-based ESA, and could therefore be negatively affected by this change. The DWP impact assessment estimates savings of only about £11 million per annum while noting that 70 per cent of those affected will lose £25 a week as a result of qualifying for income-related ESA only, which equals about £1,300 a year. A further 10 per cent will lose almost £100 a week by virtue of not qualifying for income-related ESA. Over a year, this amounts to almost £5,000. Only 20 per cent, or just under 3,000 claimants, will get exactly the same amount of income-related ESA that they would have got under the youth provisions. Based on the Government’s own estimates, this loss of income may affect as many as 10,000 people by 2015-16.

This means that only 20 per cent of claimants will be financially unaffected by these changes. I believe that it is wrong that these savings should be levied from such a small group of vulnerable young people. Indeed, the department’s own impact assessment notes that:

“The abolition of the ESA ‘Youth’ provisions is more likely to have an impact on disabled people because ESA is directly targeted at people with health conditions that limit their ability to work. There is a risk that the affected group will be more likely to need more support because of their condition than all ESA customers”.

I therefore believe it is wrong that the Government should seek to remove a vital form of financial support for young people with serious long-term health conditions. For a proposal that by the Government’s own admission will impact around 10,000 young people, the cumulative savings will be only £11 million.

In Committee, the Minister stated that he believes that his,

“proposals have built-in support for this group of claimants”.—[Official Report, 8/11/11; col. GC 58.]

I can assure the Minister that this is not the case and that his proposals will have a significant financial impact on young people with serious health conditions who may have no other option for financial support. For example, young people with cancer are not always able to access DLA, particularly if they have a treatment period of less than nine months. ESA may be their only option while they are undergoing treatment.

The Minister has also argued that no other group has this kind of concession in contributory benefits. However, that is exactly the point: the rules exist precisely because it is unlikely that young people will have been able to build up the requisite national insurance contributions, but they should still be able to access a benefit designed to provide financial support to those unable to work because of illness or disability. I do not see how this proposal can be part of a “principled approach to reform”, which is the basis for the whole of welfare reform.

The measure will remove a vital source of financial support for young people with serious health conditions and disabilities. I hope that the Minister will give some indication that he recognises this and that he is willing to look at it again or at least give it further thought. I take the point made by the noble Baroness, Lady Meacher, about the abuse of the system, which certainly needs to be addressed. When the time comes for me to decide whether to press my amendment, I will be mindful of that.

[Baroness Lister of Burtersett]

My Lords, I support Amendments 45 and 46, to which my name is attached. The purpose of the amendments has already been explained and the case has been made convincingly. I simply want to add to that. Young people who are disabled from birth or early in life have been entitled to claim ESA or its predecessors from the age of 16 since 1975, as the noble Lord, Lord Patel, pointed out. That has been accepted by all the main parties as a fair and proper way to treat young disabled people. Indeed, my noble friend Lord McKenzie did not thank me for reminding the Grand Committee that in a previous Parliament he was urged to be more generous to this group of young people by the then Opposition spokesperson, the noble Lord, Lord Skelmersdale. I was therefore rather surprised when the Minister argued in Grand Committee that no other age group can qualify for contributory ESA without having paid, or been treated as having paid, national insurance contributions. That is because all other age groups will have had the opportunity to earn such contributions, as the noble Baroness, Lady Meacher, and the noble Lord, Lord Patel, have already pointed out.

We are talking about a very small group. According to the Government’s figures, about 15,000 young people are likely to be affected each year. Some of these will qualify for income-related ESA, although sometimes at a lower rate, when there will be an estimated average loss of £25 a week, which is a significant sum for those on a low income. They may become automatically eligible for passported benefits such as free prescriptions, depending on the outcome of the review currently being undertaken by the Social Security Advisory Committee, but that does not justify removing their underlying entitlement to a weekly income. One in 10—or 1,500 a year—will lose all entitlement to benefit, perhaps because they have a partner in full-time work or because of the capital rules.

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Moved by

[Lord Patel]

38: Clause 51, page 36, line 34, leave out “365 days” and insert “a prescribed number of days which must be at least 730”

[Lord Patel]

My Lords, I shall speak also to Amendments 38A and 39A. These amendments oppose the introduction of a 12-month limit on the amount of time in which those in the work-related activity group, or WRAG, are able to claim contributory employment and support allowance, or ESA.

All the cancer charities, such as Macmillan, the Disability Benefits Consortium and the wider disability sector also oppose the principle of time-limiting ESA. I believe that people with a disability or illness who have paid into the system should be able to receive support for as long as they meet the eligibility criteria for ESA and are unable to work due to their condition.

As I said, Clause 51 amends the Welfare Reform Act 2007 to introduce a 12-month limit on the amount of time that a person in the WRAG is entitled to contributory ESA. The cancer charities, such as Macmillan, along with the rest of the disability sector, strongly oppose the principle of time-limiting. There is already more than enough incentive for people with disabilities and long-term illnesses such as cancer to get back into work. What they need is enough time and the right support. What they do not need is to be penalised for not recovering quickly enough.

The Government are clearly opposed to removing time limiting altogether. Therefore, I understand the need to find a compromise that meets the Government’s priority of finding savings but, crucially, gives disabled and sick people a more realistic timeframe in which to return to work. Evidence supports extending the one-year time limit.

The impact on disabled people of time-limiting ESA will be considerable. The Government’s own figures show that 94 per cent of people in the WRAG will need ESA for longer than 12 months. Those affected, including 7,000 people with cancer, will lose up to £94 a week of vital support, despite having paid national insurance contributions throughout their working lives. The proposal in the Bill is based on the Government’s objective of making savings. However, the Government have provided no evidence to demonstrate that a 12-month time limit is reflective of the amount of time needed by people in the WRAG before returning to work.

The coalition agreement promised to protect the vulnerable from spending cuts. In his party conference speech the Prime Minister, David Cameron, said:

“People who are sick, who are vulnerable, the elderly—I want you to know we will always look after you. That’s the sign of a civilised society and it’s what I believe”.

It cannot be right to take crucial financial support away from people who have paid into the system but are unable to work due to illness.

The Government’s own figures estimate that 94 per cent of people in the WRAG will not be ready to return to work after one year—I repeat: 94 per cent—but the Government have stated that the change will help to encourage people to come off benefits. They have also stated that the proposal is aimed at making savings and is not based on an estimate of what is a reasonable length of time within which to expect people with a disability or illness to be able to return to work. It cannot be right for the Government to propose such a significant policy change without providing evidence that the measure is appropriate or reasonable.

In Committee, the Government were asked to publish evidence to demonstrate that a 12-month time limit reflected the needs of people in the WRAG. I have seen no such evidence. The Government were also asked which organisation of experts they had consulted before making the decision to introduce a time limit for contributory ESA. They have not consulted any of the organisations which have subsequently raised concerns about the impact of this policy. The time limit will be imposed on people who are in the WRAG. Those in the WRAG are people who, following the work capability assessment, have been found not to be fit to work because of their disability or illness. While those in the WRAG are expected to carry out some work-related activities to help them to return to work, they are still considered to be not fit for work. If, following the WCA they had been found to be fit to work, they would be eligible for ESA and placed on jobseeker’s allowance. People in the WRAG could still be severely disabled or debilitated, as is the case with people recovering from aggressive cancer treatment.

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[Lord Freud]

My Lords, as noble Lords know, we have two systems of housing support. We have housing benefit for those who rent their property and support for mortgage interest for those who need support with their mortgage payments. Currently mortgage payments are running rather lower than benefit, but that is only because mortgage rates are lower and that can change. We are looking at the whole system of support for mortgage interest, but there is a system in place to support people whether they are home owners or payers of rent.

On the basis of what I have said, I hope that the noble Lord will feel able to withdraw his amendment. Before I ask that he do so, I confirm that the Government see Amendment 39A as linked to Amendment 38, but that none in this group is consequential on another, and we would expect the House to make a decision on each individually.

[Lord Patel]

I thank the noble Lord for his response. I could pick up on each of the points that have been made and answer them, but the time does not allow that. I have to say to the noble Lord, Lord Blencathra, that we are talking here about the level of savings from welfare reform. We are not talking about the Government finding extra expenditure; it is the reduction in savings that we are talking about. The total reduction in saving of the whole welfare reform package will be in the region of £18 billion. We are talking here about not taking money away over five years even to the level of £1.3 billion from the most vulnerable in society. As I pointed out, they are those on the lowest third centile of income, to whom, as the noble Lord, Lord Wigley, said, it is £94 a week. If we are going to rob the poor to pay the rich, we are entering into a different form of morality. The noble Lord asked the question whether it is moral. I say that it is moral to look after those that are sick, vulnerable and poor. If that is immoral, what is moral is to pay the rich—and we are on a different planet altogether.

I come to the figures quoted. The figures are based on the assumption that no one goes back to work until they reach 24 hours. If you speak to cancer patients, you find out that their greatest desire is to go back to work, because it is part of therapy. Noble Lords should read the powerful article written by a very bold and courageous lady called Jenni Russell, which says:

“Not skiving, minister, just suffering cancer”.

She describes what it felt like to have treatment for breast cancer. If you speak to patients on chemotherapy—and my noble friend Lady Finlay sees them every day—they feel good after four days of misery following chemotherapy. By the time they feel better it is time for another period of misery. The effect is cumulative to the point that after a few courses they cannot get out of bed and they wonder whether death might not be better than the disease. It is those people that we are talking about. They are not skivers or benefit cheats. They are the last people who cheat. Are we going to make savings there? I was honest in accepting that what I proposed was costly, but I am not going to be dishonest and say that therefore we should let those people suffer. I ask the House to determine who should be supported.

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Moved by

[Lord Patel]

38A: Clause 51, page 36, line 36, at end insert “except—
(a) where a person is receiving treatment for cancer when entitlement shall continue for so long as the person has (or is treated as having) limited capacity for work; or(b) the person has (or is treated as having) limited capacity for work as a consequence of a cancer diagnosis.”

[Lord Patel]

My Lords, Amendment 38A is specific to cancer patients. I have already spoken enough about the suffering of cancer patients and why they require extra time to recover. I have already referred to the article in the Sunday Times, in which a lady who experienced this describes very fully how debilitating it is. The amendment is merely to say that those cancer patients who are currently undergoing treatment, whether it be chemotherapy or radiotherapy, or who have recently finished treatment and are recovering from it but need that extra bit of time, should be supported. This is a small number of cancer patients; there are not many because most of them have recovered within a year. I beg to move.

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Moved by

[Lord Patel]

39A: Clause 51, line 4, leave out “365 days” and insert “a prescribed number of days which must be at least 730”