Patients with Rare Diseases

Debate between Liz Twist and Helen Whately

Thursday 9th March 2023 Westminster Hall

[Helen Whately]

As the hon. Member described, it is fantastic that a mum who saw the problem and the opportunity came up with a way of helping. I will have to write to him to answer his question. I assure him, and everyone present, that we will take further steps to make it easier for the rare diseases community to participate in research. That is exactly the point. It is very important that those most affected—the individuals and their families—are involved in research and innovations, such as the one the hon. Gentleman described. We will continue to improve the use of securely held national datasets in research.

Our new plan seeks to reduce the health inequalities experienced by people living with rare conditions. The hon. Member for Strangford spoke of pemphigus vulgaris and its greater prevalence among some ethnic groups. That is one aspect of health disparities, but health disparities can be faced by all people living with a rare disease when they seek to access the services they need, and we aim to address that. Through NHS England’s Core20PLUS5 framework, we will help integrated care systems to address the health inequalities faced by people living with rare conditions.

Similar efforts are under way in all four nations of the UK. Although each nation is taking a distinct approach through its action plan to best meet the needs of its healthcare system and population, we continue to work closely across the four nations to ensure that we learn from each other.

I assure the hon. Member for Strangford that I share his views about the importance of co-operation across the UK on rare diseases. The rare diseases advisory group at NHS England has membership from all devolved nations to ensure that it identifies and seizes opportunities for collaboration. Patients can move between parts of the UK to access specialist services.

The hon. Member for Blaydon mentioned the newborn heel prick, or newborn blood spot screening programme, and asked whether we could screen for more conditions, specifically spinal muscular atrophy, or SMA. We test for more than 30 rare conditions during pregnancy and the newborn period, and nine conditions via newborn blood spot screening. There is a good reason why we screen for fewer conditions in the UK than in other countries: it is because we believe that we have a more rigorous approach to evaluating the benefits, and also potential harms, of screening than other countries.

The 2022 rare diseases action plan committed us to establishing a blood spot task group to further develop the evidence base for newborn blood spot screening. The UK National Screening Committee has since established the blood spot task group, which is working to improve the evidence available to the screening committee when considering the screening programmes to be added to the blood spot.

[Liz Twist]

Having had discussions with the newborn screening committee representative, I am aware of the concern that we do not want to go too far, and we want to be rigorous, but it does seem that, in comparison with many other countries, we are selling ourselves short. I am glad to hear about the taskforce, and I know that Genetic Alliance UK is represented on that, but there is real concern in the rare disease community that there are things that we could be testing for. We do not seem to be able to make progress. SMA is a classic case of that.

[Helen Whately]

I hear the hon. Lady’s concerns. There is clearly a level at which it would be inappropriate for me to get involved in such decisions, which are generally made by expert committees, but I am happy to look into her question further, and to write to her with what I find out.

I want to leave everyone present with a clear message: the Government are committed to addressing the challenges faced by the rare disease community. I understand that at times it can seem as though progress is not happening quickly enough. Nevertheless, we have seen real progress since the publication of the action plans, and I want us to go even further. With the continued support and partnership of the rare diseases community, for which I am immensely grateful, we will not only strive but succeed in doing better for those with rare diseases every single day.

Finance (No. 2) Bill (Fourth sitting)

Debate between Liz Twist and Helen Whately

Wednesday 5th January 2022 Public Bill Committees

[Liz Twist (Blaydon) (Lab)]

I speak in this debate as an MP whose constituency has been blighted by landfill, so of course landfill taxes are very welcome, and as my hon. Friend the Member for Erith and Thamesmead has just said, an increase in that tax is welcome as part of an environmental policy that—as she also said—needs to go much further in future. However, I want specifically to ask the Minister about enforcement of the requirement to collect and pay landfill tax after the experience in my constituency of a failed HMRC investigation lasting some six years, the unfortunately named Operation Nosedive. What will the Treasury do to ensure that enforcement action is robust and followed through to make this tax as effective as it can be?

[Helen Whately]

The hon. Member for Blaydon made a really important point about the enforcement of landfill tax. I am also aware of concerns about the associated waste crime. There has been a reduction in the landfill tax gap in recent years. The landfill tax gap for England and Northern Ireland was estimated at £200 million—22.7%—in 2019-20, which is a decrease compared with the tax gap in 2018-19, when it was £275 million, or 29%. So there has been an improvement in the enforcement of landfill tax, but I recognise the point that she makes and we will continue to work on that.

There is a new taskforce dedicated to tackling serious and organised waste crime. The joint unit for waste crime will bring together law enforcement agencies, environmental regulators, HMRC and the National Crime Agency to deal with waste crime.

[Liz Twist]

Can the Minister tell me how the tax gap is calculated? I am pleased to hear that it has gone down, but am interested to hear how the gap is calculated and monitored.

[Helen Whately]

I hope the hon. Member is happy for me to write to her on the methodology for calculating that particular tax gap. I am happy to set out further action that will be taken to address waste-related crime as well.

I thank the hon. Member for Erith and Thamesmead for pointing me to the report that she mentioned. She made broad points about the tax system and its role in meeting net zero. The net zero review was a substantial document that was very open about the thinking and the challenges involved in our transition to net zero. I do not think that here and now is the place to set out a net zero tax strategy, which I think she was asking me to do, so I hope she will understand if I do not stand here and do that, but we have put a lot on paper about the Treasury’s thinking on these matters.

--- Later in debate ---

[Liz Twist]

I want to comment on two areas. First, I want to speak in support of new clause 17. My hon. Friend the Member for Erith and Thamesmead has explained her concerns that the tax, as currently proposed, is unambitious. That, I think, is a good reason to look at reviewing the measures that are in place and seeing whether they are doing what they were expected to do but also whether they need to be strengthened in the future, so I very much support the new clause.

The other issue that I want to raise is about clause 83 itself. It is the considerable number of references in schedule 11 to further measures being taken in the future through secondary legislation. There is a striking number of them. Paragraph 3, for example, allows the commissioners to make regulations—admittedly by the affirmative procedure, which is better than the negative procedure. We see this again in paragraphs 4 and 6. Can the Minister explain to us why we need so many areas to be covered by secondary legislation? Should they not in fact be covered by the primary legislation?

[Helen Whately]

First, I welcome the support from the hon. Member for Erith and Thamesmead for the plastic packaging tax. I am glad to hear that she does not intend to oppose clause 83 and schedule 11.

To pick up specifically on new clause 17, tabled by the hon. Members for Ealing North, for Erith and Thamesmead and for Blaydon, it suggests that the Government should conduct future reviews of the tax and the impact that it has, including six months after the passing of the Bill for the tax rate and chargeable packaging components, and for all aspects of the tax a year after introduction or annually after an initial report. The Government have already set out a large amount of detail about the expected impact of the tax, and the National Audit Office report on environmental taxes recently concluded that Her Majesty’s Treasury and HMRC had

“undertaken extensive work to understand the possible impacts of the tax”.

Further detail on modelling to assess the impacts of the plastic packaging tax was set out by the Office for Budget Responsibility in its economic and fiscal outlook published in March 2020. This included most significantly the increase in recycled plastic in packaging and more marginal impacts, such as switching to alternative plastics or materials.

As with all tax policy, the Government will continue to keep the plastic packaging tax under review. Given the substantive information already published and the fact that very limited data will be available within six months after the passage of the Bill, it would be premature to review the impacts of the tax as suggested. As to evaluating the impact of the tax annually after its introduction, being able accurately to isolate the impact of particular policy measures alongside other external factors is inherently difficult, and the Government will carefully consider these issues. As set out in the tax information and impact note published in July 2021, consideration will be given to evaluating aspects including the rate, threshold and exemptions from the policy after at least one year of monitoring data has been collected and analysed.

The Government agree that it is important to understand the efficacy and impact of the plastic packaging tax, but given that these issues have been previously considered and will be kept under review, we do not think that new clause 17 is necessary.

I come now to a couple of the specific points made by the hon. Member for Glasgow Central. I can assure her that there is not an exemption from the plastic packaging tax for freeports. The clause is to ensure that the tax continues to apply with any changes to freeports legislation. And that would be the reason for not including everything in primary legislation—to answer the hon. Member for Blaydon’s point—but requiring some flexibility through secondary legislation.

[Helen Whately]

What the hon. Lady read out is in line with what I said—there is not an exemption for freeports to supply the necessary flexibility—but I am happy to write to her with the reason why freeports get such a specific mention.

The hon. Lady also raised a point about a freeport for Scotland. We remain committed to establishing at least one freeport in Scotland, Wales and Northern Ireland as soon as possible.

The clause and schedule make sure that the plastic packaging tax will operate as intended from its commencement on 1 April 2022.

[Liz Twist]

I wonder whether the Minister has forgotten to address the issue of secondary legislation.

[Helen Whately]

I jumped across to that point when I was addressing the freeports point. In general, it is to allow flexibility, where primary legislation is not the right place to put measures. I am happy to write to the hon. Lady if there is anything further to add on her particular point.

Question put and agreed to.

Clause 83 accordingly ordered to stand part of the Bill.

Schedule 11 agreed to.

Ordered, That further consideration be now adjourned. —(Alan Mak.)

Oral Answers to Questions

Debate between Liz Twist and Helen Whately

Tuesday 2nd November 2021 Commons Chamber

[Helen Whately]

We are indeed taking steps to support the haulage sector, where there is a long-running situation with vacancies for HGV drivers. The action we have taken includes making available 5,000 temporary visas for the short term, increasing the number of tests available so that there is greater capacity for new drivers to take tests, changing cabotage restrictions, and funding improved facilities for drivers. In the longer term, we need to see both better pay and better conditions for lorry drivers.

[Liz Twist (Blaydon) (Lab)]

3. What recent steps he has taken to help reduce economic inequality.

Support for Carers

Debate between Liz Twist and Helen Whately

Thursday 22nd July 2021 Westminster Hall

[Helen Whately]

I am very happy to meet the right hon. Gentleman to talk about that. It is about the technicalities of data, data sitting in different places, and how we can overcome that so that we have a better and common information source. Yes, I am absolutely happy to meet him.

I will come back to some of the things that we did during the pandemic, because I want to cover the topics that have been raised in the debate. We published guidance specifically for carers to try to support them through the pandemic, including on maintaining their own health and wellbeing. We provided PPE for unpaid carers who live separately from those for whom they care, in line with the clinical advice on when it is appropriate for a carer to use PPE. Crucial to all that was drawing on the experiences and insights of carers, including young carers, during the pandemic. We held a series of roundtable discussions in order to do that. Young carers frequently fly under the radar of services and community networks that would otherwise help them.

We provided extra funding to charities, including £500,000 to the Carers Trust in order to provide support to those who experienced loneliness during the pandemic, and over £150,000 to Carers UK so that it could extend its helpline opening hours in order to provide information and support to unpaid carers. We have supported initiatives for young carers, including providing over £11 million to the Sea, Hear, Respond programme, which ran from June 2020 until March 2021, in order to support more vulnerable children and young people.

We have also worked to give extra support to young carers in education. During the national lockdown, schools and colleges remained open for the children of critical workers and vulnerable children, including young carers. I recognise that if a young carer looks after somebody who is more vulnerable to covid, they will be more worried about going to school, so I am determined to ensure that, as part of our catch-up programme for children, some of the £3 billion education recovery package can be used to support young carers who have missed out on school.

I want to talk about day services, which provide essential respite for carers. It is so important that carers, particularly those who do high-intensity care, have time to see a dentist or doctor, to go shopping or to do something for themselves. Such respite is so important, and the day service or respite care is of great value to the individual who attends it. I was truly disappointed to read Carers UK’s new research report, “Breaks or breakdown”, which was published during Carers Week. It said that

“72% of carers have not had any breaks from their caring”

during the pandemic. However, many respite services and day services have not been fully operational for much of the last 16 months. I want to see the reopening of such services. That is one reason why, as part of the infection control fund, we have given nearly £1.5 billion to social care during the pandemic. One use of that fund has been to support the reopening of day services.

I know we can go further. Just last week, I spoke to local authority leaders and emphasised to them the importance of reopening day services and respite services, and I urged them to take advantage of the support that is on offer. I personally commissioned two surveys of day service provision—one last October and one in spring this year. During that period, that provision has increased; the situation in the recent report was better than last year’s, but it is not yet back to the pre-pandemic level. I will continue to work with adult directors of social services, the Ministry of Housing, Communities and Local Government and local authorities to fully understand the challenges in getting day services back to the level that they were at before.

[Liz Twist]

I very much welcome the efforts made to reopen day services. However, will the Minister accept that many local authorities already find their social care funding stretched incredibly hard and so find it difficult to maintain some of those services? Does the Minister accept that there is a funding issue here?

[Helen Whately]

Of course, there are financial pressures across public services, and more widely across our economy we face an extremely challenging time, but we have given significant extra funding to local authorities to support them through the pandemic. That is why I urge them to prioritise this issue. I emphasise the importance of the carer’s needs assessment that local authorities carry out, because that is such a crucial way of identifying what support a carer may need for themselves and their wellbeing, including the need for respite and taking a break from caring, and then making sure that that happens.

Oral Answers to Questions

Debate between Liz Twist and Helen Whately

Tuesday 23rd February 2021 Commons Chamber

[Helen Whately]

Last autumn’s spending review included £1 billion of funding to address backlogs, tackle long waiting lists and support up to 1 million extra checks, scans and additional operations in the NHS. As the NHS recovers, for liver care, as for other areas of treatment, we will look to not only recover backlogs but continue to improve the care provided and help people to live healthier lives to prevent illness in the first place.

[Liz Twist (Blaydon) (Lab)]

If he will make a statement on his departmental responsibilities.