Caroline Dinenage – 2019 Speech on Batten Disease

Below is the text of the speech made by Caroline Dinenage, the Minister for Care, in the House of Commons on 16 July 2019.

I congratulate my hon. Friend the Member for North East Somerset (Mr Rees-Mogg) on securing this important debate on what is a heartbreaking issue, as I am sure you will agree, Mr Speaker. He and other Members have spoken up movingly and with great passion about and on behalf of their constituents, and I am grateful to them for doing so. I understand how vital it is for patients and their families to be able to access new medicines as quickly as possible. This is one of the hardest types of debates that one has to respond to as a Minister, when we can put ourselves in the position of the families up and down the country who are facing such a desperate situation.

I will endeavour to respond as fully as I can to the issues that my hon. Friend and other Members raised, but I should begin by saying, sadly, that I am unfortunately unable to comment on matters relating to the availability of Brineura, a drug used to treat Batten disease, as this is currently subject to an active judicial review procedure.

As we have heard from hon. Members, Batten disease is a terrible condition that progresses rapidly, leading to loss of speech, mobility and vision, progressive dementia and early death. It is a rare genetic disease, and it is estimated that around three to six children in the UK are diagnosed each year, with around 30 to 50 children living with the condition. Current treatment options are limited to symptomatic relief and supportive care. I fully understand how vital any new treatment option could be to the families of children with this rare and devastating condition.

The Government want patients, including patients with rare diseases such as Batten disease, to be able to benefit from effective new treatments. It is in the interests of all NHS patients that we have a system in place for making evidence-based decisions on whether new medicines should be made routinely available to patients. That is why we have NICE, which makes independent, evidence-based recommendations for the NHS.

NICE now operates two separate programmes for the assessment of new medicines: first, a technology appraisal programme through which NICE assesses the vast majority of new medicines; and secondly, a highly specialised technologies programme that is reserved for the evaluation of very high cost drugs for the treatment of very small numbers of patients suffering from very rare diseases in England who are treated in a handful of centres in the NHS.

Where NICE recommends a treatment for use on the NHS, NHS commissioners are legally required to make funding available so that it can be prescribed to patients. This is reflected in the NHS constitution as a right to NICE-approved treatments. The intention of NICE is to have a system that means that the public can have confidence that the price paid by the NHS is consistent with the improvement in health outcomes that the medicine brings, ensuring fairness and the best possible use of funding for patients and the NHS.​

As I said to the hon. Member for Newcastle upon Tyne North (Catherine McKinnell), NICE has recommended around 80% of products it has assessed. Through its important work, many thousands of patients, including patients with rare diseases, have benefited from access to effective new treatments.

It is right that NICE’s processes continue to evolve with developments in science, healthcare and the life sciences sector. That is why it keeps its methods and process updated through periodic review that includes extensive engagement with stakeholders, including patient representatives, drug manufacturers and clinicians. In this spirit of continuous development, through the 2019 voluntary scheme for branded medicines pricing and access, which was published in December, the Government announced that NICE would be undertaking a review of its methods and processes in 2019-20 for both its technology appraisal and the highly specialised technologies programme.

Caroline Dinenage – 2019 Statement on Health and Social Care

Below is the text of the statement made by Caroline Dinenage, the Minister for Care, in the House of Commons on 1 May 2019.

Yesterday, 30 April 2019, Four Seasons healthcare group announced that they have appointed Richard Fleming, Mark Firmin and Richard Beard (Alvarez and Marsal) as administrators to Elli Investments Limited (EIL Guernsey) and Elli Finance (UK) Plc (EFUK). These two companies between them hold £625 million of the company’s debt. It has also announced the launch of an independent sales process of the operational parts of the group, Four Seasons healthcare, Brighterkind and the Huntercombe group, which will continue to deliver care as normal.

The group has been going through financial restructuring negotiations with its main creditor H/2 Capital Partners since December 2017 with a standstill agreement on its interest payments in place. This agreement has been extended several times, with the latest of these having expired at 23:59 on 29 April. The planned sale of the operating businesses, through an independent, court appointed administrator, will now bring greater certainty to those in care, their families and the 22,000 people employed by the company.

I would like to update the House on the steps being taken to assure people with care and support needs currently being met by the Four Seasons healthcare group that they should not see a gap in their care service—no matter how their care is funded.

I have met with the company and the administrator to seek assurance that they are putting the continuity of care at the forefront of this process and that there will be no sudden care home closures. I am pleased to confirm that they have provided both me and the Care Quality Commission with this reassurance.

In the event that a buyer is not found for any of the care homes, the company has undertaken to manage any future plans around the transition of care with great sensitivity, taking time to ensure that residents are supported to find a new home.

In 2014, the law was changed giving the CQC a new responsibility to monitor the financial sustainability of the largest and most-difficult-to-replace care providers across the country. That means the CQC has a legal duty to notify local authorities if it considers there to be a credible risk of service disruption (stage 6 notification) as a result of business failure so that they have more time to prepare their plans to protect individuals. The CQC is clear that there is no current risk of service disruption and is not issuing a stage 6 notification to local authorities at this time.

The Care Act 2014 also places duties on local authorities to intervene to protect individuals where their care provider is no longer able to carry on because of business failure. There should never be a gap in the care that an individual receives. Local authorities have a statutory ​duty under section 48(2) of the Care Act to meet the needs of individuals temporarily if their care provider is no longer able to carry on. Business failure is a normal part of a functioning market and local authorities have appropriate plans in place to minimise disruption of services

The CQC and my Department are closely monitoring the situation. They are also working closely with the Local Government Association, the Association of Directors of Adult Social Services, NHS England and Four Seasons healthcare group to ensure that individuals’ care and support needs continue to be met.

Caroline Dinenage – 2019 Statement on Social Care

Below is the text of the statement made by Caroline Dinenage, the Minister for Care, in the House of Commons on 23 January 2019.

Today I would like to update the House on social care funding following the Opposition day debate of 17 October 2018.

Modern society is in the fortunate position where people are living longer and life expectancy for those living with complex health conditions, including disabilities, has dramatically increased. However, with 1.5 million more people aged over 75 expected in the next 10 years, we recognise the pressures this places on the health and social care system and the Government are taking steps to support the sector in responding to these challenges.​

In the short term, the Government have given Councils access to up to £3.6 billion more dedicated funding for adult social care in 2018-19 and up to £3.9 billion for 2019-20. This injection of funding is the biggest that councils have ever received and is helping the NHS and social care to support people to live for longer and more independently.

Despite the fact that the NHS is busier than ever before, the majority of patients are discharged quickly. We know that adult social care capacity can become increasingly pressured over the winter months and this can have a knock-on effect on NHS hospitals. This funding is helping to reduce delays, get patients home quicker and free up hospital beds across England for more urgent and acute cases. This is having a tangible effect with delayed transfers of care accounted for 4,580 occupied beds per day in November 2018—a decrease of 2,081 per day against the February 2017 baseline.

The autumn Budget also announced an additional £650 million of new money for social care in 2019-20. This includes another £240 million for adult social care to alleviate winter pressures on the NHS next year and a further £410 million to improve social care for older people, people with disabilities and children. Councils will also benefit from an additional £55 million increase in the disabled facilities grant in 2018-19. This additional capital funding will provide home aids and adaptations for disabled children and adults on low incomes to help them continue to live independent lives in their own homes.

References to £1.3 billion of cuts are entirely misleading as the figure refers only to the revenue support grant which should not be considered in isolation when councils have access to council tax, business rates and other local income to deliver their local services. In fact, funding for local government will increase in real terms in 2019-20. This means more money for councils to deliver for their local communities.

This Government’s actions mean that funding available for adult social care is set to increase by 9% in real terms from 2015-16 to 2019-20 and the additional funding is allowing councils to support more people and sustain a diverse care market.

All councils have statutory duties to look after the vulnerable, elderly and disabled people in their area. The Care Act established a national threshold that defines the care needs that local authorities must meet which eliminates the postcode lottery of eligibility across England. In addition to providing social care services, last year local authorities in England advised over 500,000 people on how to access other services to meet their care needs. This includes services provided by leisure, housing, transport and care providers as well as voluntary groups.

In the longer term, the NHS’s Long-Term Plan is committed to supporting people to age well. As part of this the Government will increase investment in primary medical and community health services by at least £4.5 billion by 2023-24. This will support people to get joined-up, integrated care closer to home and will increase the capacity and responsiveness of community and intermediate care services to those who will benefit the most. Furthermore, the plan recognises the importance of integration between health and social care and commits to upgrading NHS support to all care home residents ​who would benefit by 2023-24 through the enhanced health in care homes programme, which embeds healthcare professionals into care homes.

The Government have committed to publishing the Green Paper at the earliest opportunity which will consider the fundamental issues facing the adult social care system and present proposals for reform while the social care funding for future years will be settled in the spending review where the overall approach to funding local government will also be considered.

Caroline Dinenage – 2016 Speech on Gender Equality


Below is the text of the speech made by Caroline Dinenage, the Parliamentary Under Secretary of State for Women, Equalities and Family Justice, at the UN General Assembly in New York on 15 March 2016.

Good afternoon chair. It’s my great pleasure to speak on behalf of the United Kingdom delegation.

When our world feels ever-smaller, yet its peoples often feel far apart; when challenges multiply while certainties shrink; when gender equality feels almost within our grasp and yet so far away – these are the times when it feels vital for us to come together and work together. So I feel immensely privileged and honoured to be here with you today.

We are stronger together and CSW provides us with the valued opportunity to share our successes and learn from those of others; to reflect on the areas where we have failed; and to strengthen our partnerships.

This is, beyond doubt, a critical time for gender equality. Across the globe, women are constantly achieving new firsts: running multinational corporations, becoming heads of state, even exploring space.

But they are also at the eye of the storm of conflict and repression, their bodies the site of social and cultural battles and the object of aggression and contempt. This makes our destinies interlinked, and the importance of working together for women’s freedom and equality all the more vital. Gender equality is at the heart of the Global Goals for Sustainable Development, and those Goals are just the beginning of what the Head of UN Women has described as ‘a massive and relentless drive towards a world of equality: a Planet 50-50 by 2030’.

That is what makes CSW so important; it is why we are all here today; and it is why everybody in this room has a key role to play in ensuring that gender equality is at the top of the international agenda.

We are certainly lucky in the UK to have a good story to tell about progress towards gender equality.

I agree with Gloria Steinem that, “Nothing changes the gender equation more significantly than women’s economic freedom”. So we have given very high priority to maximising women’s life chances in the workplace.

· Now in the UK, we’ve more women in work and more women-led businesses than ever before

· We’ve helped to achieve the lowest ever gender pay gap on record

· And we’ve more than doubled women’s representation on the boards of our biggest companies since 2011.

But economic freedom must go hand in hand with social freedom, and in particular the right to live without fear.

Last week we launched the new cross-government Violence Against Women and Girls strategy, which sets out ambitious plans for building on our work to prevent violence, to support victims, and to take action against perpetrators. This includes tackling the challenges facing women in the age of technology and social media

We have also announced that we will be extending the Convention on the Elimination of all forms of Discrimination Against Women to the Cayman Islands and Anguilla. Almost 40 years after it was adopted in this place, it remains as relevant as ever.

We need to share the good news about all we have achieved. But I am also looking forward to learning at CSW – learning from you, and from our international partners, about what works elsewhere. And I am hoping for fresh ideas, new ways of thinking, creative risk-taking, ways to raise girls and boys free from stifling stereotypes, ways of engaging men to champion gender solidarity, ways of unlocking the power and resourcefulness of women.

There is no time to be complacent. It is over twenty years since the Beijing Declaration and Platform for Action was agreed and yet people continue to be disadvantaged, abused and even killed for simply being born female. We, in this room, need to show determination against forces that are hindering progress: discrimination, regressive ideas, and harmful social norms.

Last week, on International Women’s Day, I reflected on how it was 150 years since the ladies of the Kensington Society presented a petition on the women’s right to vote to the UK Parliament. It started the suffragette movement.

I wish we could bottle the courage and the vision of those early campaigners and use it to counter the tiredness and cynicism of much public debate on gender equality. But while I am here at the CSW, surrounded by wise, passionate and committed women, I realise perhaps we already have.

Caroline Dinenage – 2015 Speech at Relate Event


Below is the text of the speech made by Caroline Dinenage, the Parliamentary Under Secretary of State for Women, Equalities and Family Justice, at a Relate event on 17 December 2015.

Thank you for the introduction. May I say how pleased I am to be here with you as you launch the ‘Breaking up is hard to do’ report. Thank you to everyone at Relate who worked so hard in producing it – not least Dr. David Marjoribanks, its author.

And I also thank colleagues at the Department for Work and Pensions for commissioning this important report. I know you at Relate have worked with a wide spectrum of distinguished specialists and professionals in preparing it, including officials from the Ministry of Justice (MOJ).

Many of your findings chime with my own views on family justice. You want families to have the information and tools they need to make informed decisions. You want to give families the best possible chance of reaching a secure and stable arrangement. You want to help as many families as possible to find their own solutions – rather than falling into court proceedings which can be expensive and unnecessary. So do I. I will say more about that in a moment.

But first if I might introduce myself to those of you I have not met before. And I have met a good number of the people in this room since I took up post as Family Justice minister. I have visited family courts, met judges, Cafcass practitioners, families going through separation. I’ve made it a priority to meet as many of the people who work in this important area of justice as possible. I haven’t managed to meet all the key players yet, however, but I am working on it!

In the meetings I have had, I have been impressed by the professionals who work together to support separating couples to make the best decisions about their children and finances. Many of these people share my own view that the system could work much better for separating couples and does not yet sufficiently or consistently put children first.

We know that it’s very sad when a family breaks up and an acrimonious split between parents can have damaging effects on children. When children are drawn into conflict it can lead to both emotional and behavioural difficulties. Children benefit most from cooperative parenting following a separation and a positive relationship with both parents.

But from speaking to people who work in family justice, as well as those who go through it, I know that people feel there is no single source of authoritative, accessible information or advice on what they can do to resolve their disputes. Our own new research set out in the Varying Paths to Justice report tells us that people have a strong preference for avoiding court, which they see as daunting, particularly in relation to child arrangements. They are not aware of the options available to resolve their problems themselves and feel there is no clear ‘route’ for those who want to avoid litigation.

This cannot continue. I want to build a family justice system around the needs of its users with a particular focus on the most vulnerable – whether these are children, vulnerable adults or victims of domestic violence. We want to support people during the most stressful periods of their lives.

I want to support and incentivise separating and separated couples to make their own arrangements for their children and finances, wherever possible.

There should be clear alternatives to court that help separating couples work together to make arrangements that are appropriate to their circumstances. Where there are children involved, parents should have the tools to help them make arrangements that are sustainable and can be reconsidered in light of the changing needs of their children, in a way that a court order cannot. Where couples are making arrangements about their finances, they should have a clearer understanding of what is fair.

I want to foster a cultural change to enable people to solve their own disputes in a less acrimonious way and not look to government to do it for them – with the right tools and information, most separating couples shouldn’t need to take their disputes to court.

That means mothers and fathers stepping up and taking responsibility for their own separation – where that’s possible – and together working through the practicalities, always remembering to put children first. And it requires a system that enables parents to do just that.

I am a strong supporter of family mediation in the private law process. Mediation enables parties to take ownership of their dispute and helps them to reach an agreement rather than be subjected to a court order which one party – or both parties – may not want.

However, I accept that there are other ways in which parties can be helped to make their own arrangements, for example the Separated Parents Information Programme (SPIP), or the website and call centre service offered by DWP to enable parents to resolve disputes over child maintenance.

That is why I would like to see a responsive system which is not one-size-fits all. I want to introduce an end to end, user-focused range of services. I want to see a system which minimises the impact of separation on parents and their children. Our Varying Paths to Justice report shows that people feel they would benefit from improved access to clear and timely information around the options available to them to help them resolve their problems – especially online. We’ll be looking at that as we consider how best to help those experiencing separation.

Let me be clear about something, however: reform of the system will not be about excluding lawyers. Some people will still choose to hire a lawyer to help them through the process. But they shouldn’t need to if they don’t want to. Some people, of course, will always need to go to court. Any change to the system must involve effective protection for vulnerable people so that their disputes are resolved quickly, in a way that minimises impact on themselves and their family. And the sad truth is that the courts will still need to play a role in cases where parents are not working productively together to agree arrangements that are in the best interests of their children. The law is clear that in most cases this will mean children continuing to have an ongoing relationship with each parent. We will be reforming our courts system to transform it into a service that is built around the needs of all the people who use it and which will fundamentally improve access to justice for citizens.

That is what my colleagues and I at MOJ will be working on. I will tell you more about it as our work develops. We will certainly take on board the advice and experience of those working in family justice and the many experts and academics across the voluntary and other sectors who have important experience in this field.

Thank you.