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

Baroness Brinton Excerpts

2nd reading
Tuesday 24th May 2022 Lords Chamber

[Baroness Brinton (LD) [V]]

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

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

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

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

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

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

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

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

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

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

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

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

Queen’s Speech

Baroness Brinton Excerpts

Tuesday 17th May 2022 Lords Chamber

[Baroness Brinton (LD) [V]]

My Lords, I declare my interests as a vice-president of the Local Government Association and as a vice-chair on the All-Party Group on Adult Social Care. I start by echoing the Minister’s tribute to Her Majesty the Queen and will add how good it was to see her using her Oyster card today on the new Elizabeth line.

A Queen’s Speech is obviously about legislation, the economy and finances, and the priorities of a Government. But it is also an indicator of the attitude and approach of a Government to how they are going to govern. The last five years have meant that they have had to face some extreme challenges; some of this Government’s own making—Brexit—and some external ones—Covid and Russia’s invasion of Ukraine—to which our Government have had to respond. The cost of living crisis, energy costs, food costs: millions of people are struggling to pay their bills, and with inflation currently at 7%, a 30-year high, this is likely to increase. Public services become even more critical when individuals and families are struggling, and they, too, are finding it difficult.

The Minister referred to the managed migration to universal credit, which has caused real problems for claimants. The Government’s own documents say that of the 2.6 million households still on legacy benefits,

“we estimate around 1.4 million (55%) would have a higher entitlement on UC, 300,000 would see no change and approximately 900,000 households (35%) would have a lower entitlement.”

But the poorest in our society already face impossible pressures on their costs, and for nearly 1 million households to face a lower entitlement because of a migration to a new benefit is a disgrace.

The Government say they understand the problem, but unfortunately there is no real offer of help for the people who are already having to choose between heating and eating, and who are not in a position to take on extra work, as one MP suggested yesterday, or to cook better. Instead, this Government will raise an additional £13.8 billion through personal taxes this year. That is why from the Liberal Democrat Benches we say that VAT should be reduced immediately, saving the average family £600 a year, and there should be an emergency Budget: these families need action right now.

The Social Security (Special Rules for End of Life) Bill, extending the period of terminal illness from six to 12 months to be eligible for special provisions, is also very welcome, but I hope that Ministers will also guarantee a speedy decision within a few days of notification, rather than using the extra time to delay implementation.

I am looking forward to my noble friend Lord Storey’s contribution on the Schools Bill, but I want to make a brief point on Part 3, to do with the register of children out of school. While it is absolutely vital that there is a record of where school-age children are, the Secretary of State announcing the naming and shaming of children not in school and their parents, as well as increasing the criminal penalties for parents, is very worrying, including for those parents who wish to home school.

Criminalising parents and naming and shaming children is completely inappropriate when a child, for example, has been so severely bullied that they are traumatised and waiting for a CAMHS appointment to start therapy, which currently can take 18 months to two years. It is also completely inappropriate that children who are immunocompromised, for example on chemotherapy, are currently forced to go into school without special measures and ventilation, even though their consultants say that these children cannot live with Covid. Parents of some of these children are currently being taken to court and fined.

Any register must record why a child is absent, and specialist advice, such as that of a hospital consultant, should be followed. This means alternative provision online may be needed and should be both provided and fully funded. Covid has also laid bare the inadequacies of too many school buildings, whether in terms of ventilation, appropriate space to learn in, or safety features, so we need an urgent investment in our school estate.

I have talked already about the increase in living costs, but many disabled people need much more heating than most families, and there are some who need to run life-saving equipment, such as ventilators and heart monitors, overnight. I have had family experience of this with my granddaughter. People in this particular group are very easy to help, because they are registered with their local energy supplier for emergency help in the event of a sustained power cut—so why cannot these disabled people be given grants to cover the extra costs that they face through no fault of their own?

More generally, disabled children cannot access the healthcare and other services that they have a right to. Forty-three per cent of families with disabled children have waited more than a year to get respite care, and more than four in 10 disabled children have waited more than a year for an operation.

The lack of funding available in local councils means that more parents of disabled children have had to take their local authority to tribunal to get the support they are entitled to. Lest you do not believe me, in 96% of hearings, the tribunal supports the parents. These children deserve that support, and frankly our local authorities deserve the funding that they need to deliver it.

Disabled people still face problems with transport and I am grateful to the noble Lord, Lord Borwick, who in his speech last week reminded us that when the Disability Discrimination Bill of 1995 was in Committee, the Minister said that

“taxis newly licensed must, as a condition of licence, be accessible to all disabled people, including those who use wheelchairs.”—[Official Report, 15/6/1995; col. 2035.]

In addition to that, we heard only two days ago of BBC correspondent Frank Gardner being stuck yet again on a plane because Heathrow’s disabled service had failed. There are many other problems. Nearly three decades after the Disability Discrimination Bill was passed, our taxi service can still opt out of carrying wheelchair users, and people can still just sit and wait on aeroplanes.

I turn now to working disabled people. NHS England has just reported that, even in the NHS, disabled staff are nearly twice as likely to face formal capability questions about whether they can do their job properly. NHS England is now asking trusts to look at whether they are doing that unfairly.

From these Benches, we have concerns about the Bill of Rights. We believe that it will further take away the rights of those with protected characteristics, including disabled people, who can currently rely on the positive obligations placed on public authorities by the European Convention on Human Rights. The Bill of Rights will cut those positive obligations and severely weaken people’s ability to access their rights under the convention.

Banning conversion therapy is absolutely the right thing to do. However, it is not right to exclude trans and non-binary people from the ban, thereby allowing conversion abuse to continue to take place against two groups of people with protected characteristics.

I am pleased that the mental health reform Bill is coming into the process this year. It is a very important Bill and the Minister was right to say that. People definitely need a stronger say in their treatment. However, the Royal College of Psychiatrists, the Local Government Association and many other stakeholders make the vital point that mental health reform must also include fully resourced funding for mental health services on the front line, training mental health professionals, workforce planning and community services. It is also vital that those with learning disabilities are not kept in secure accommodation. This is a scandal of which we should all be ashamed and which I hope will be ended by the Bill.

Mental health is part of a wider health crisis. This is undoubtedly partly as a result of Covid, but many of the current problems are long-standing and point to a lack of investment over the last 10 years and an unwillingness in Ministers to tackle them honestly. The NHS is undoubtedly in crisis and doing the best that it can, as it always does, while its staff is exhausted, understaffed and demoralised. The most visible points are the ambulance crisis leading to an A&E crisis, the lack of clinical staff and the cuts in capital spend, resulting in too many NHS trusts delivering services in poor buildings.

Today, a paramedic noted that her first patient of the day in her ambulance was now in a queue at the local A&E department. She commented that if today was like her last shift, she would spend the entire shift with this one patient in this one car park. This is not a one-off; it is happening all over the country every day. A&E departments are stuck because beds cannot be freed up, since patients cannot be sent from other wards into residential or nursing care—or even to their own homes—if there are no carers to look after them. The social care sector continues to see staff leaving for better paid jobs, including in the NHS, without being in a position to charge more for their services. Instead of real help, Ministers and the press continue to attack the NHS and the care sector. They attack the NHS for having too many managers, but the NHS’s 2% compares well to the German and French healthcare systems, which have more than double that figure.

From these Benches, we hoped to see more about tackling the inequalities in our health system. Whether they are based on deprivation, ethnicity or disability, we need to address the social determinants of health. Instead of cutting public health budgets, as happened to the UKHSA last month, we should be investing in food reformulation, tobacco bans and social prescribing. Until this happens, the focus will be on those already ill, rather than preventing them becoming ill.

Above all, everyone involved in the health and social care sector is looking to the Government to plan and invest in the workforce. The NHS staff survey published as recently as March found that 52% of staff said that they cannot do their jobs properly because of staff shortages. Vacancies across the NHS are now back to their pre-pandemic levels, with over 110,000 full-time-equivalent empty posts. Some 48% of advertised consultant posts are unfilled; this needs to be addressed urgently.

Finally, I ask the Minister why unpaid carers’ leave is once again not in the Queen’s Speech, despite it being a Conservative Party manifesto commitment. Over half of working carers say that they needed unpaid carers’ leave to help them juggle work and care. Despite commitments to help carers at the end of the passage of the Health and Care Bill, the Government have once again let carers down. Ministers talk of levelling up, but I fear that the Government are not listening to the evidence of how the current cost-of-living crisis and the cuts to our public services are affecting the most vulnerable in our country.

FCDO Nutrition Policy

Baroness Brinton Excerpts

Monday 21st February 2022 Lords Chamber

[Lord Ashton of Hyde (Con)]

My Lords, the noble Baroness, Lady Brinton, would like to participate virtually, and I think that this would be a good moment to call her.

[Baroness Brinton (LD) [V]]

My Lords, whilst the Government’s commitment to investing £1.5 billion in nutrition over the next eight years is a start, it is still less than one quarter of what the International Coalition for Advocacy on Nutrition has recommended. Will this reduced amount meet the UK’s commitment to achieve the WHO global nutrition targets by 2025, which include a 40% reduction in the number of children under five who are stunted, and a 50% reduction in anaemia in women of reproductive age?

[Lord Ahmad of Wimbledon (Con)]

My Lords, as I have already said, we remain fully committed to ensuring our key objectives on nutrition are met. We are working very closely with organisations, including the World Health Organization, to ensure that the pledges made recently at the Tokyo summit also go towards achieving the very objectives that the noble Baroness has laid out. Specifically, by having every programme of the FCDO in bilateral support that we provide to key countries also focus specifically on nutrition and fulfilling our reporting back on an annual basis to OECD, I think we will see much more focus spent on achieving the targets we are setting ourselves across the piece.

Nutrition for Growth Summit

Baroness Brinton Excerpts

Wednesday 13th October 2021 Lords Chamber

[Lord Ahmad of Wimbledon (Con)]

My Lords, obviously a decision was taken on the reduction of the overall ODA spend but, as I have already said, we are working constructively with key partners and are supportive of the summit that will take place in Japan in December. Once the spending review has been completed, I will be able to share with your Lordships the nature of the exact spend. There are various streams to this funding, including the match funding. Again, on reviewing this area, I have seen the net benefit of how UK funding helps support generate further funding, including from the private sector.

[Baroness Brinton (LD) [V]]

My Lords, The Power of Nutrition charitable foundation says:

“The Summit is a unique opportunity to accelerate financial commitments … With concerted, bold actions … from all sectors, we can make 2021 the year where progress on nutrition is not reversed but accelerated”.


Can the Minister say whether the Government, under their chairmanship of G7, will set an example and increase their aid budget for nutrition to £120 million, reversing cuts made by the Chancellor earlier this year?

[Lord Ahmad of Wimbledon (Con)]

My Lords, I believe I have already answered part of that question but let me reassure the noble Baroness that we are leading on this issue, including in discussions with G7 partners.

Overseas Development Aid: Covid-19 Vaccination

Baroness Brinton Excerpts

Thursday 21st January 2021 Lords Chamber

[Lord Ahmad of Wimbledon (Con)]

My Lords, on the noble Lord’s second question, he will appreciate that at the Gavi summit we saw a real commitment by the world community, led by the United Kingdom, not just to deal with the global pandemic but to ensure that the other challenges we face—particularly on vaccine distribution, including against polio and cholera—are not forgotten. These remain live challenges in many parts of the world. That underlines our commitment to ensuring that such challenges remain very much on the priority radar. Covid-19 vaccines and their distribution are our primary focus. I agree that we should be looking at the experience of all our partners. There are NGOs working throughout Africa that have real experience of dealing with the Ebola outbreak. We should learn from that. I have spoken to leading scientists in Pakistan who are still dealing with polio, both there and in Afghanistan. They were able to deploy quickly certain measures to deal with Covid-19 when it happened. This is a learning curve, and we must work together to ensure optimum outcomes not just for one country, but for us all.

[Baroness Brinton (LD) [V]]

The UK is rightly proud of the leadership of many Governments over many years in Gavi. It was alarming to hear on the “Today” programme yesterday that only 25 vaccine injections had been delivered into arms so far in developing countries. Can the Minister reassure the House that the UK’s extra orders for the Pfizer and AZ vaccines have not caused any delays in the urgent rollout of the Gavi orders?

[Lord Ahmad of Wimbledon (Con)]

I, too, heard that announcement. As Minister for South Asia, I know that there are large parts of India, for example, where the population is highly vulnerable and suffers extreme poverty. The Indian authorities are part of the rollout. I have also heard that the vaccine is now being delivered to Bangladesh. The Government are stressing to all our partners that support for the COVAX facility, particularly the AMC, is a key part of ensuring equitable distribution for all.

Environmental Protection (Plastic Straws, Cotton Buds and Stirrers) (England) Regulations 2020

Baroness Brinton Excerpts

Friday 10th July 2020 Lords Chamber

[Baroness Brinton (LD) [V]]

My Lords, these regulations are key to the UK’s responsibility to reduce single-use plastics. However, as Trailblazers and other disabled organisations have made clear, there is an issue for some disabled people, who need to use plastic straws because of their flexibility and ability to be used in hot and cold drinks.

I thank the Minister for listening to disabled people and ensuring that the exemption in these regulations meets their needs. However, I want to ask him about the social impact of these regulations. What guidance is being given to the hospitality sector to train organisations and all staff and explain the needs of these disabled people so that outlets will still maintain a supply of plastic straws, even if these are not kept visible? Without plastic straws, those venues become inaccessible to these disabled visitors. Will Defra continue to consult disabled people and groups such as Trailblazers to ensure that disabled people are not disadvantaged or stigmatised when they use needed single-use plastics?

Open Doors 2019 World Watch List

Baroness Brinton Excerpts

Wednesday 23rd January 2019 Lords Chamber

[Lord Ahmad of Wimbledon]

First, I assure my noble friend that there is no discrimination against Christians or indeed anyone of any faith. However, she does bring to light an important issue about the situation in Syria. I am acutely aware of the challenges being faced by Christians in Syria and which continue to be faced in Iraq. We have seen appalling crimes committed against the Christian communities, as well as others. The major challenge that remains for Syrian Christians is the exodus of anyone from Syria who is of the Christian faith. My noble friend raises an important point about the Home Office scheme. I will certainly raise that with Home Office colleagues. But I assure my noble friend, and, indeed, all noble Lords, that we remain absolutely committed to ensuring that we stand up for the rights of people of all faiths and none, be it domestically or internationally.

[Baroness Brinton (LD)]

My Lords, in order to develop an appropriate policy to help persecuted Christians and other religious or belief groups, it is vital to have accurate data about them. Can the Minister say whether Her Majesty’s Government have made any progress in developing a database across government that tracks violations of freedom of religion and belief, and other important data about religion or belief minorities?

[Lord Ahmad of Wimbledon]

My Lords, the noble Baroness raises a very important point. It is certainly something that I have been looking at very closely since my appointment last summer as the Prime Minister’s Special Envoy on Freedom of Religion or Belief. There are many sources that we currently utilise to determine the level of persecution of different communities around the world. Equally, we have strong partnerships with representatives and leaders of different communities around the world. But her case for having a comprehensive database is a valid one, and certainly we will be looking to see how we can validate data that is provided by communities and organisations such as Open Doors, to ensure that it is verifiable and that we can share it with key partners to ensure that the issues of persecution can be addressed.

Freedom of Religion and Belief

Baroness Brinton Excerpts

Thursday 18th January 2018 Lords Chamber

[Lord Ahmad of Wimbledon]

I believe that is our approach. Through our diplomatic corps, to whom I pay great tribute, we are able to have not only public but, importantly, private and candid discussions with countries around the world on the importance of human rights and the equality of human rights. The other area of opportunity where I believe the UK can play a key role is that, as we build democratic institutions and countries look towards their constitutions, those constitutions must reflect equal human rights for all.

[Baroness Brinton (LD)]

My Lords, as a founding member of the APPG, I thank the Minister for his response to the report. Can he provide details about the £600,000-worth of projects funded by the Magna Carta fund which the Government have said have led directly to positive freedom of religion or belief outcomes in 20 countries? If they are so positive, what will the Government do to ensure that the principles behind those projects will be spread elsewhere?

[Lord Ahmad of Wimbledon]

First, through the Magna Carta fund we have been working in our priority countries to ensure that freedom of religion and belief is raised, not just directly but—a point made earlier by the noble Lord, Lord Collins—by building and working with civil society organisations and human rights defenders within those countries to ensure that they have political, diplomatic and financial support. In further support of those objectives, I am delighted, as I said earlier, that we are working hand in glove with our colleagues at DfID. There is an added fund now of £12 million which is targeted at development assistance but also at ensuring that human rights, including freedom of religion or belief, are enshrined in our projects and support across the world.

Transatlantic Trade and Investment Partnership

Baroness Brinton Excerpts

Tuesday 18th November 2014 Lords Chamber

[Lord Livingston of Parkhead]

Decisions regarding the NHS are made by the commissioning authorities. If I recall correctly, substantial privatisation of the health service took place under the previous Government. It will be a matter for the democratically elected Government and the commissioning authorities as to what may be done by private services and what may not.

[Baroness Brinton (LD)]

My Lords, there has been a great deal of scaremongering about the National Health Service and TTIP. Might it be helpful for BIS to highlight the EU directive on NHS procurement which makes it absolutely clear that the NHS will not be caught by TTIP contracts?

[Lord Livingston of Parkhead]

That is absolutely correct. In fact, Commissioner de Gucht has been very clear:

“Public services are always exempted ... The argument is abused in your country for political reasons”.

That is pretty clear. The US has also made it entirely clear. Its chief negotiator said that it was not seeking for public services to be incorporated. No one on either side is seeking to have the NHS treated in a different way. The EU is very clear on that and trade agreements to date have always protected public services. That will absolutely continue within TTIP.

Sri Lanka

Baroness Brinton Excerpts

Wednesday 2nd July 2014 Lords Chamber

[Baroness Warsi]

I have a lot of respect for the noble Lord, but I fundamentally disagree with everything he said. It was right for the Prime Minister to attend the Commonwealth Heads of Government Meeting. It was right to make those tough messages be heard in-country in Sri Lanka. It was right for the Prime Minister to visit regions in Sri Lanka and make his point. It was right that, because of that visit, we built the international momentum which resulted in the Human Rights Council resolution.

[Baroness Brinton (LD)]

My Lords, may I return to the violence in Aluthgama? I am very grateful for my noble friend’s earlier answer, but I wonder if there has been any progress on arrests for this particularly horrible violence—which resulted not just in three dead and 80 injured but in a mosque and virtually every property of Muslims in that town being torched. While it is good that President Rajapaksa has promised to rebuild damaged property with his support, I think that the community would much prefer to hear that the perpetrators have been caught and what the Government will do to prevent such violence in the future.

[Baroness Warsi]

I note what the noble Baroness says. The violence in Aluthgama and Beruwala was deeply concerning, and she is right: there were not only fatalities but a huge amount of further damage. Of course we welcome the Sri Lankan Government’s assurances that they will investigate the attacks and prosecute those responsible. I am not sure what the latest situation is, but if there is any up-to-date information, I will certainly write to her.