Learning Disability and Autism Training

Caroline Dinenage Excerpts

Tuesday 5th November 2019 Written Statements

[The Minister for Care (Caroline Dinenage)]

The Government have made improving the care and treatment of autistic people and people with learning disabilities a priority. Society is rightly judged on the way it treats its most vulnerable citizens.

Health and social care professionals have a crucial role to play in helping people with learning disabilities and autistic people lead longer, heathier and happier lives. We know there is good practice out there and excellent examples of staff working incredibly hard and supporting individuals and their families to receive the best possible care. However, staff can often lack the training or experience to deliver effective and compassionate care, resulting in significant health inequalities for people with learning disabilities and autistic people and poorer health outcomes.

In February this year, my Department published a public consultation to obtain views on how best to ensure that staff working in health and social care receive the right training to understand the needs of people with learning disabilities and autistic people and develop the skills to provide the most effective care and support. The consultation ran for 10 weeks, closing on 26 April 2019.

I am pleased to say there was an excellent response to the consultation. We received over 5,000 responses from a range of key stakeholders as well as individual members of the public and I am grateful to those who took the time to respond to the consultation. I am also pleased to confirm that the overwhelming majority of responses were supportive of the principle of mandatory training.

Today, we are publishing the Government response to the consultation, confirming our intention to introduce mandatory learning disability and autism training. A copy of the response will be placed in the Libraries of both Houses.

Our vision is that in future all professionals will, before starting their career or through continuing professional development, undertake training which covers a “common core curriculum” for learning disability and autism so that we can be confident there is consistency across education and training curricula.

We are committing to work with all professional bodies and the devolved Administrations to agree a common core curriculum based on the core capability frameworks for supporting people with a learning disability and autistic people. We recognise that it will take time to ensure that all training is aligned with the frameworks; with periodic updates to syllabuses and training requirements, but we will work with the regulators to ensure the closest possible alignment at the earliest opportunity.

Like everybody across the House, I have been moved by the personal stories about how care and treatment has been experienced by people with learning disabilities and autistic people, which in some cases has resulted in the worst possible outcomes. Cases like that of Oliver McGowan, whose story captures why learning disability and autism training is so important. I can announce that we will be developing a high-quality training package that will be named in Oliver’s memory.

I am also pleased to confirm that we are committing £1.4 million to develop and run a series of trials across both the NHS and social care setting, so that we better understand the impacts before implementation and a wider roll out.

To make the training mandatory we are proposing a number of actions, recognising that different approaches are required for different staff groups. Further detail on this, and the proposals above, is set out in the consultation response.

We need to ensure that those who work in health and social care understand the needs of people with learning disabilities and autistic people, how their needs can differ from the general population and for staff to be able to respond to those needs appropriately and positively. I believe the action we intend to take will do just that and ensure that everybody with autism or a learning disability receives the high-quality care they have a right to expect.

[HCWS91]

Personal Health Budgets: Legal Rights

Caroline Dinenage Excerpts

Thursday 31st October 2019 Written Statements

[The Minister for Care (Caroline Dinenage)]

Today, and following consultation, I am pleased to announce that I am laying legislation that will extend the legal right to have a personal health budget to a further two groups. These groups are:

People eligible for section 117 aftercare services; and

People who access wheelchair services, whose posture and mobility needs impact their wider health and social care needs.

The evidence base for personalised care demonstrates a positive impact on people, professionals and the system. It is shown to produce better outcomes and experiences, improving individual’s quality of life, whilst reducing health inequalities. It has also demonstrated the ability to reduce pressures on the system—people who are more confident and able to manage their health conditions have 18% fewer GP contacts, and 38% fewer emergency admissions than people with the least confidence.

That is why the provision of personalised care was a central component of the NHS long-term plan, with the intention of making personalised care, business as usual. This means reaching 2.5 million people by 2023-24, doubling that within the decade.

Significant progress has already been made. Over 70,000 people now have a personal health budget; nearly a 300% increase compared to the same time two-years ago. “Universal Personalised Care” has also recently been published, setting out the 21 actions that together we will take in the coming years. It can be found at: www.england.nhs.uk/wp-content/uploads/2019/01/universal-personalised-care.pdf

Personal health budgets are integral to delivering personalised care, and this extension marks an important step in delivering our ambition. We will continue to explore the feasibility of further extension and consult in due course.

Timing

The consultation on extending the right to have a personal health budget was concluded on 8 June 2018 and the consultation response published on 21 February 2019. The changes to the regulations are being made at the earliest opportunity to bring about these positive impacts as soon as possible and will come into force on 2 December, rather than awaiting a common commencement date.

[HCWS54]

Oral Answers to Questions

Caroline Dinenage Excerpts

Tuesday 29th October 2019 Commons Chamber

[David T. C. Davies (Monmouth) (Con)]

1. What steps he is taking to increase access to hearing aids.

[The Minister for Care (Caroline Dinenage)]

In 2018, the National Institute for Health and Care Excellence issued new guidance called “Hearing loss in adults: assessment and management”, which aims to improve hearing loss services, including the provision of hearing aids. The guidance brings together evidence, standards, guidance and case studies to encourage best practice across England.

[David T. C. Davies]

Does my hon. Friend agree that we in England have been cutting waiting times for hearing aids by using private companies such as Specsavers, and that that demonstrates a huge difference between privatising the NHS, which this Conservative party would never, ever support, and using private companies to provide a first-rate health service free at the point of use?

[Caroline Dinenage]

My hon. Friend hits the nail on the head. We are absolutely committed to the principle of an NHS that is free at the point of use, but the NHS has, under successive Governments, commissioned care from the private sector to ensure that patients receive the treatment that they need as quickly, safely and near to home as possible. All NHS healthcare, irrespective of how it is provided, must be of the highest possible quality and improve outcomes.

[Jim Fitzpatrick (Poplar and Limehouse) (Lab)]

When the Government published their action plan on hearing loss in 2015, it was widely welcomed across the deaf community, as well as in the House, but there is now just a sense in the deaf community that NHS England’s commitment to the action plan is somehow waning. Will the Minister confirm that the Government are still fully committed to the action plan and will also encourage NHS England to carry on?

[Caroline Dinenage]

Yes absolutely; I can give the hon. Gentleman that clear reassurance, and I thank him for his work as chair of the all-party group on deafness.

[Tracey Crouch (Chatham and Aylesford) (Con)]

The Minister will recall that in the loneliness strategy we showcased Action on Hearing Loss’s “Hear to Meet” befriending service, which connects those with hearing impairments to share experiences. Alongside the work that the Department is doing to provide good-quality hearing aids, what more is it doing to recognise that those with hearing loss, especially children, can be among the most lonely in society?

[Caroline Dinenage]

I thank my hon. Friend for that question. She is absolutely right to highlight the fact that any form of disability can cause social isolation and loneliness, but hearing loss and deafness can do so almost more than anything else. I pay massive tribute to the incredible work that she did as Minister for sport and civil society to further this. I am a keen member of the inter-ministerial group on hearing loss, which does so much to further that aim and aspiration.

[Ruth Smeeth (Stoke-on-Trent North) (Lab)]

North Staffordshire clinical commissioning group is the only CCG in the country to restrict hearing aids. It is about to launch its consultation to ensure that all my constituents can get hearing aids when they need them. Does the Minister agree that it should be compliant with NICE guidelines?

[Caroline Dinenage]

The hon. Lady is absolutely to raise that. CCGs are responsible for the commissioning of NHS audiology services, including the provision of hearing aids. We expect all CCGs to have regard to the NICE clinical guidance when commissioning services for their local population.

[Sir John Hayes (South Holland and The Deepings) (Con)]

With the Sheffield Children’s Hospital last night, I was reminded again that in childhood, dreams are made and die are cast, and through our senses, we come to terms with the world around us. As Dickens said, the best of all stories is a child’s story. Sometimes those stories are not happy ones initially, and deaf children in particular struggle and suffer as they come to terms with the world about them. Will the Minister ensure that every deaf child in Lincolnshire has not only an education, health and care plan, but all the innovations and technology that allow them to live their life to the full and cast a future as glorious as any of ours?

[Caroline Dinenage]

I certainly could not have put that more articulately than my right hon. Friend did, and he is absolutely right. In 2018, the Government provided contracts worth more than £25 million to help children with special educational needs and disability to access the right support. The Department for Education is reviewing the SEND commitment within that Department, but we are supporting it to do that in the Department of Health and Social Care to ensure that children get the care and support and educational support plans that they need.

[Mr Speaker]

We all noted the reference to Dickens; I am glad that the right hon. Gentleman’s record of literary and philosophical allusions continues apace.

[Jim Shannon (Strangford) (DUP)]

I thank the Minister for the response so far. Will she outline what discussions have taken place with independent groups such as Specsavers, which does excellent work providing wider access to NHS-funded tests and hearing aids, with special reference to more rural areas?

[Caroline Dinenage]

The hon. Gentleman is right to raise this. As I said in my first answer, it is important that we can work collaboratively with organisations in the private sector and across the NHS to make sure that patients, wherever they are in the country, in urban or rural areas, can access the right care and support when they need it.

[Ian Austin (Dudley North) (Ind)]

If the Minister and other Members want to find out how to provide a phenomenal audiology service, they should come to Dudley and visit the clinical CCG buildings at Brierley Hill. It is an amazing service. When I was referred to them for a hearing aid, I could not believe the service. You ring up and say “When can I come in?”, and they say “When would you like to come in?” “Could I come in tomorrow?” “What time would you like to arrive?”—no waiting lists, an absolutely phenomenal service. I was worried—

[Ian Austin (Dudley North) (Ind)]

I was worried that I was getting special treatment because I was the MP, but I was not; it is just an absolutely fantastic service, and I want to commend the brilliant men and women who provide it. It would be great if the Minister came to see them.

[Caroline Dinenage]

I don’t know about you, Mr Speaker, but I could listen to the hon. Gentleman talk all day. He is absolutely right to commend the wonderful services provided by the team in Dudley. I would be more than happy to visit at any time.

[Tom Brake (Carshalton and Wallington) (LD)]

2. How much capital funding he plans to allocate to Epsom and St Helier University Hospitals NHS Trust in each of the next three years.

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[Fiona Bruce (Congleton) (Con)]

7. What steps he is taking to support end-of-life care.

[The Minister for Care (Caroline Dinenage)]

We are absolutely committed to supporting end-of-life care, not only through £4.5 billion-worth of investment in primary and community services but through providing an additional £25 million to palliative care and hospices in 2019-20. Today, I am in a position to announce how the geographical spending of that money will be allocated, and I will be putting the regional breakdown in the Libraries of both Houses this afternoon.

[Fiona Bruce]

What are the Government doing to better resource support for children’s palliative care, including addressing the shortage of specialist doctors and hospice nurses needed to care for children with life-limiting conditions?

[Caroline Dinenage]

We care passionately about the way in which children’s palliative care is delivered. That is why we have increased the children’s hospice grant from £12 million this year to £25 million in 2023-24. We have also seen a nearly 50% increase in doctors working in palliative care medicine since 2010, but the interim NHS people plan will set out actions to meet the challenges of workforce supply and demand.

[Tim Farron (Westmorland and Lonsdale) (LD)]

Last week in the Queen’s Speech debate, I mentioned a constituent of mine, Liz, who had declined the offer of palliative radiotherapy treatment simply because it would involve a four-hour round trip to get from the Lakes to Preston. Does the Minister agree that it is wrong for cancer patients to be forced to choose shorter lives because they cannot cope physically with the longer journeys?

[Caroline Dinenage]

The hon. Gentleman is absolutely right to raise this matter, and I know that he is meeting the Minister for Health, my hon. Friend the Member for Charnwood (Edward Argar), shortly to discuss the details of that individual case. More broadly, the long-term planned commitment to spend that additional £4.5 billion- worth of investment in primary and community health services will definitely help those services to be delivered much closer to people’s homes.

[Huw Merriman (Bexhill and Battle) (Con)]

Hospice in the Weald is building the UK’s first cottage hospice, and I viewed it on Friday. It allows family members to care for and stay with their loved ones until the end of their life, and it is absolutely fantastic. The cottage hospice is looking for a Minister to come and open it. I know that there is an election coming, but will a Minister from the winning Front Bench come and do that honour for us in East Sussex?

[Caroline Dinenage]

I am grateful to my hon. Friend for mentioning that brilliant initiative. I think we will probably be falling over ourselves to volunteer to do the honours, but I would be very happy to put myself forward for that.

[Mr Speaker]

Not least due to the charm and courtesy of the hon. Member for Bexhill and Battle (Huw Merriman), quite apart from the magnificent facility that he has just been busily championing.

[Sir Vince Cable (Twickenham) (LD)]

The Minister will know that her colleague, the Justice Secretary, has declined to proceed with a call for evidence on the sensitive issue of assisted dying. Would it not be appropriate for her Department to gather evidence from the professional bodies involved in end-of-life care, to ensure that legislation is evidence-led?

[Caroline Dinenage]

You will know as well as everyone in the House, Mr Speaker, that that is a sensitive matter on which Members have contrasting views. The right hon. Gentleman is right to continue to raise the issue, but the legislation surrounding it continues to lie with the Ministry of Justice.

[James Cartlidge (South Suffolk) (Con)]

8. What steps he is taking to ensure the adequate long-term provision of mental health services.

--- Later in debate ---

[Helen Goodman (Bishop Auckland) (Lab)]

9. What recent assessment he has made of the effect of prescription costs on the health outcomes of people with chronic illnesses.

[The Minister for Care (Caroline Dinenage)]

Extensive arrangements are in place to help people to afford national health service prescriptions. Those include a broad range of prescription charge exemptions, for which someone with a chronic illness may qualify.

[Helen Goodman]

I think the Minister is being too complacent. The chronic illnesses list has not been updated for years, and I have had complaints from Mr E with coeliac disease, Mrs L with multiple sclerosis and Mr A with cystic fibrosis—he is taking up to 50 tablets a day. With each item costing £9, can the Minister not see how much hardship this is putting on people?

[Caroline Dinenage]

There have been NHS prescription charges in England for decades, and successive Governments have concluded that patients who can afford it should pay prescription charges in order to contribute to the running of the NHS, but a huge number of exemptions are in place and mean that, in England, 89% of NHS prescription items dispensed in the community are currently provided free of charge. People on low incomes who do not qualify for an exemption will be eligible through the NHS low-income scheme.

[Mr Edward Vaizey (Wantage) (Ind)]

Prescriptions not only include pharmaceuticals, so I congratulate the Secretary of State on the launch of a national academy for social prescribing, which he pushed through with his own energy and enthusiasm. Prescribing alternative treatments such as art therapy and speech and language therapy can have a massive impact on people’s mental health and on many other ailments. This Department has undertaken a revolutionary step, and I wholeheartedly congratulate him and all his Ministers.

[Caroline Dinenage]

The right hon. Gentleman plays down his role in this agenda; he has been a great champion for social prescribing. All of us in the Department’s Front-Bench team have met people for whom social prescribing has been life changing; it has totally changed the way they are able to deal with their symptoms and illnesses. It really is a massive game changer.

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[Stephanie Peacock (Barnsley East) (Lab)]

With one in three arthritis sufferers missing out on at least one prescription due to cost, what can the Minister say to the pensioner in Barnsley who has had their pension cut, lost their local bus service and now lost out on the treatment that enables them to simply walk down the street? Is it not time the Government matched Labour’s promise, and invested in pensions, services and free prescriptions on the NHS?

[Caroline Dinenage]

I simply say to the hon. Lady that people over the age of 60 qualify for free prescriptions.

[Julie Cooper (Burnley) (Lab)]

Too many patients cut back on their prescribed medicines or go without them altogether because they simply cannot afford to pay prescription charges. Research by University College London indicates that this non-adherence to prescribing regimes costs the NHS £500 million more in complex treatments and hospitalisation. Prescription charges are a tax on sickness that disproportionately burdens those who have chronic illnesses and those on low incomes. Does the Minister agree that it is high time we brought an end to these charges, which fly in the face of the principle of an NHS free at the point of delivery?

[Caroline Dinenage]

I suppose I should probably have declared an interest in this issue, because I am severely asthmatic and I do not get free prescriptions, but then again I do not think I should. There is a prescription exemption system designed specifically to assist people who are most likely to need support in paying for prescriptions: people on low incomes or in full-time education; the over-60s; people living with many long-term conditions; and people with an increased risk of illness, such as pregnant women. That is why 89% of prescriptions are dispensed without charge.

[Mike Wood (Dudley South) (Con)]

10. What steps he is taking to improve cancer (a) diagnosis and (b) treatment.

--- Later in debate ---

[Barbara Keeley (Worsley and Eccles South) (Lab)]

Mr Speaker, as this is the last time that we will have Health questions with you in the Chair, I want to thank you for being a fantastic Speaker—particularly through your support for Back Benchers and ensuring that we can be heard through urgent questions.

Last week, we found that the number of people receiving publicly-funded social care has fallen by 15,000 in the past year. We know that 95 people a day die while waiting for care and that cuts of £7.7 billion have been made from social care budgets since 2010. Older and disabled people are paying the price. Labour has set out our plans to deliver free personal care for people aged over 65 who need it. We are providing dignity in old age. When will the Secretary of State give people the dignity and care they deserve, and bring forward the Government’s plans for social care?

[The Minister for Care (Caroline Dinenage)]

The hon. Lady will be aware that the Queen’s Speech announced a Bill to tackle the cost of adult social care. She will also know that the Prime Minister said on the steps of Downing Street that the Government will set out plans to fix the social care crisis once and for all. We need to get through Brexit, and Labour Members need to vote for the methods that will help us to deliver that, because we can then get on to the things in life that really matter, such as ensuring that no one will ever have to use their home to pay for their care.

[Rachel Maclean (Redditch) (Con)]

T9. I thank the Secretary of State very much for agreeing to increase the amount awarded to the Alex—Alexandra Hospital—to begin essential improvement works that the whole community in Redditch have been campaigning for for a very long time. Can he tell my constituents when we will finally see shovels in the ground?

Baby Loss Awareness Week

Caroline Dinenage Excerpts

Tuesday 8th October 2019 Commons Chamber

[The Minister for Care (Caroline Dinenage)]

I beg to move,

That this House has considered baby loss awareness week.

This is the fourth Baby Loss Awareness Week debate, and it is incredibly heartening to see how this has become an annual event in the House. It helps to send a clear signal outside this place about the importance of this subject in the Chamber, in the Department of Health and Social Care and in the national health service.

Over the years, many Members of Parliament have been brave enough to share their personal and painful accounts of baby loss, which, while heartbreaking to hear, have done so much to raise the profile of this important issue and to start vital conversations about it. It is absolutely right and fundamentally important that we continue to raise awareness of both the devastating impact of baby loss and the support that bereaved parents need through the grieving process to help them adjust to their loss. I do not think people ever fully heal or get over the loss of a much loved and much wanted child, but with the right care and support they might be able slowly to move forward with their lives.

[Mr Jim Cunningham (Coventry South) (Lab)]

I identify with everything the Minister has said so far. One point about these debates for members of the public who have not experienced baby loss, and for some Members here, is what we learn about the heartbreak and, in some instances, the lack of support. In general terms, it has been very good to have these debates—even if we do have them annually—because they educate the public about an issue that has too often been shoved under the carpet, for want of a better term. It is better that people now understand what other people go through in life, so I do appreciate the Minister’s opening remarks.

[Caroline Dinenage]

I thank the hon. Gentleman so much for that intervention. He is absolutely right. In this place, we have a unique opportunity to raise subjects that people find it difficult to talk about out there. In doing so, we shine a light on those subjects, and we are able to really begin to move the dial and to change practice.

With that in mind, I would like to pay tribute to the hon. Member for Eddisbury (Antoinette Sandbach) and my hon. Friend the Member for Colchester (Will Quince), who is desperate to speak, although, being a Minister, he is prevented from doing so, so we will have to restrain him. However, in a late-night Adjournment debate back in 2015, they began to raise awareness of the variation in care for families bereaved by baby loss. It was an incredibly moving debate—I remember listening to it at the time—and it really made such a magnificent difference. It was followed by the Baby Loss Awareness Week 2016 debate, which was about bringing the subject to light and challenging the idea that baby loss is an uncomfortable topic that we do not like to talk about. I am grateful to the Members from across this House who shared their personal experiences on that day back in 2016 and have done since.

International Baby Loss Awareness Week begins tomorrow and finishes next Tuesday. This year, the focus is on the need for specialist psychological support for bereaved parents who need it. The Baby Loss Awareness Alliance group of charities will be publishing a report highlighting that some parents need that kind of support as part of their bereavement care.

[Jamie Stone (Caithness, Sutherland and Easter Ross) (LD)]

I wholeheartedly support the thrust of this debate and what the Minister is saying. I am not going to make a speech today—I did that last year—but when a child is lost, which as Members know has affected my family, counselling and gynaecological advice are hugely important. However, my constituents are over 100 miles from the nearest hospital where someone can give birth. I just want to put it on the record that a 200-mile round trip from Caithness to Inverness makes getting the counselling and gynaecological advice so difficult. My constituents are losing out on that front, and I wish that Caithness general hospital in Wick could be used for such purposes.

[Caroline Dinenage]

I am grateful to the hon. Gentleman for raising that. The situation is particularly difficult in rural communities where people live a very long way from services. As we set out in the NHS long-term plan, maternity outreach clinics are going to start to integrate maternity, reproductive health and psychological therapy for women experiencing mental health difficulties arising from or related to maternity experience, and we must keep in mind those living in very remote communities when we talk about those outreach facilities.

[Andrew Percy (Brigg and Goole) (Con)]

This is such an important topic. While the Minister is on the subject of outreach clinics, may I also emphasise to her the need for maternity bereavement suites within maternity suites? I am proud to have helped secure £22,500 for the new facility at Scunthorpe hospital that opened over the summer, and I pay tribute to the Health Tree Foundation for securing that £175,000 project. It took years but we now have a bereavement suite where parents who have had a stillbirth can spend time with their other children and with their baby on the ward in that maternity suite, just as other young mums and dads do. It is a really important part of the healing process. Frankly, that should be the norm throughout all our maternity suites. As we mark Baby Loss Awareness Week, perhaps the Government could consider such a system for the country as a whole.

[Caroline Dinenage]

I am grateful to my hon. Friend for raising that point. He is absolutely right that we need to give that area a lot more attention. Having that ability to spend time together will be an incredibly valuable and important part of the process of grieving and coming to terms with the unbelievably tragic death of a baby.

[Tim Loughton (East Worthing and Shoreham) (Con)]

On the question of raising awareness, a job that was so ably started by my hon. Friends, the Minister will be aware of my Civil Partnerships, Marriages and Deaths (Registration etc) Act 2019, which became law in May, two parts of which relate to stillbirth. One gives the Secretary of State the power to have coroners investigate stillbirths and the other sets up a review by the Secretary of State to look into the registration of pre-24-week stillbirths. That review body has not met for over a year, so can the Minister update us on when the legislation will be laid so that, for the first time, coroners will have the power and ability to investigate stillbirths where they see fit to do so?

[Caroline Dinenage]

I am grateful to my hon. Friend for raising that matter, because he brought forward a really important private Member’s Bill. The consultation concluded on 18 June after receiving over 350 responses. Officials are currently analysing all those responses and will report as soon as possible.

Much has been achieved since 2015 to improve the quality of bereavement care for parents, and I put on record the efforts of the all-party parliamentary group on baby loss, ably led by my hon. Friend the Member for Eddisbury with support from Members on both sides of the House. I will speak more about developments in bereavement care in a moment, but first I would like to talk about some of the progress made by the NHS on improving safety and reducing baby loss in maternity and neonatal services.

I cannot continue any further without putting on record my enormous thanks and gratitude to my right hon. Friend the Member for South West Surrey (Mr Hunt), who has done more than anybody to further the cause of patient safety and to investigate the untimely deaths of babies, and across the NHS. I thank him from all of us for his incredible work in that space.

Members will be aware of the Government’s ambition to halve the rates of stillbirths and neonatal deaths by 2025, with an interim ambition to achieve a 20% reduction in those rates by 2020. The ambition includes similar reductions in maternal mortality and serious brain injuries in babies during or soon after birth, and a 25% reduction in the pre-term birth rate from the current 8% to 6% by 2025.

This ambition was set in November 2015, when the Lancet stillbirth series ranked the UK 33rd out of 35 high-income countries for stillbirths. Case reviews of stillbirths and neonatal deaths suggest that many such deaths might have been prevented by better clinical care, and the Morecambe Bay investigation report made 44 recommendations for improving the safety of maternity services.

In 2016-17, the Department of Health launched a range of initiatives that are being delivered by the NHS under the auspices of the maternity transformation programme, and I would like to mention a few of those achievements. Every NHS trust with maternity services now has a board that includes obstetric and midwifery safety champions to lead the development of an organisational safety culture. Every trust has received a share of the £8.1 million maternity safety training fund, and 30,945 training places for multidisciplinary teams were delivered in 2018-19, with courses focusing on training for childbirth emergencies in labour wards and in the community, as well as on leadership, communication and resilience.

Evaluation of the “Saving Babies’ Lives” care bundle found that clinical improvements such as better monitoring of a baby’s growth and movement in pregnancy, as well as better monitoring in labour, mean that maternity staff have helped to save more than 160 babies’ lives across 19 maternity units. An estimated 600 stillbirths could be prevented annually if all maternity units adopted national best practice. A revised version of the care bundle is currently being rolled out across England, and it includes elements to reduce the number of pre-term births and to optimise care where pre-term delivery cannot be prevented.

[Andrew Jones (Harrogate and Knaresborough) (Con)]

I associate myself with the Minister’s positive words about my right hon. Friend the Member for South West Surrey (Mr Hunt) and all he did to improve patient safety in the NHS. It was a fantastic piece of work.

Mr and Mrs Pickup of Knaresborough have suffered significant personal loss but are seeking to drive change to ensure that no other family have to face the same tragedy. The issue is with the automatic sharing of medical records between trusts. The process used within the NHS to ensure that that happens has not always worked very smoothly, so will my hon. Friend please consider this matter as she works to improve patient safety across the NHS?

[Caroline Dinenage]

My hon. Friend is right to raise that matter. When a tragedy could have been avoided by something as simple as sharing patient records, there is no option but to embrace the technology we need to make that a reality. Both the previous and the current Secretary of State for Health and Social Care are in favour of that.

Every trust is now using the perinatal mortality review tool to review stillbirths and neonatal deaths to make sure lessons are learned so that other families do not have to suffer in the same way. The first annual PMRT report is due for publication later this week, and it will provide an analysis of the first 1,500 cases. Overall, a review has been completed on 96% of stillbirths and 86% of neonatal deaths since the tool was launched.

[Jamie Stone]

The Minister talks about safety advice and safety good practice, so may I ask her and the UK Government to share that advice with NHS Highland and indeed the Scottish Government, who have never in my two years or so here given me a straight answer on the safety of pregnant women? Some of those women, who might be in labour, are being transported more than 100 miles from Caithness to Raigmore Hospital in Inverness, in the middle of winter, when the A9 can be blocked. I think lives are in danger.

[Caroline Dinenage]

The hon. Gentleman has put his thoughts clearly on the record, and if there is anything we can ever do to share best practice with colleagues across the devolved nations and around the rest of the world, we are always happy to do that.

The Healthcare Safety Investigation Branch is another remarkable innovation. It commenced investigations in April 2018 and has been operational in the 130 trusts providing maternity services since the end of March 2019. By the end of August, the HSIB had completed 88 investigations, with 169 draft reports looking into maternity and neonatal deaths currently with trusts and families.

NHS Resolution recently published a report on the first year of its early notification scheme for potential birth brain injuries. The scheme requires all births at NHS trusts in England from 1 April 2017 meeting qualifying criteria to be reported to NHS Resolution within 30 days for investigation, so families with a baby affected by a severe brain injury attributable to substandard care can receive significantly earlier answers to their questions. This approach means that they do not have to resort to full court proceedings and can receive financial support with their care and other needs at a much earlier stage. In the first year, 746 incidents were eligible for the scheme. There have been early admissions of liability for 24 families, who have been provided with detailed explanations, admissions of liability and, very importantly, an apology. Families have been provided with financial support for early access to additional care, respite and, where needed, psychological support and counselling.

I am happy to report that this summer the Office for National Statistics reported that the stillbirth rate in England had decreased from 5.1 stillbirths per 1,000 births in 2010 to four stillbirths per 1,000 births in 2018. That represents a 21% reduction in stillbirths two years ahead of our ambitious plan.

[Neil Parish (Tiverton and Honiton) (Con)]

I thank the Minister for Baby Loss Awareness Week and for her statement. Let me reiterate that many mothers want to have a natural childbirth, and it is essential that they can do so if possible, but we also need to make sure that the facilities are there in all of our maternity units to be able to act if a natural birth does not take place, so that we can deliver the baby without any brain injury.

[Caroline Dinenage]

My hon. Friend is right, and so much of what the Government have been working on in recent years is about making sure we have the right facilities, skills and knowledge right across our NHS estate.

Let me reiterate what I mentioned a moment ago, which is that we have seen a 21% reduction in stillbirths two years ahead of our ambitious plans. Of course every stillbirth is a tragedy, but I am sure the House will want to join me in paying tribute to midwives, obstetricians and other members of multi-disciplinary maternity and neonatal teams across the NHS for embracing the maternity safety ambition that we set, and for their incredible hard work in achieving this milestone two years ahead of target—that is remarkable. However, there is no room for any complacency, because there is so much more to do.

Many Members will be aware that the neonatal mortality rate in 2017 was only 4.6% lower than it was in 2010, and that headline figure hides the fact that the ONS data show that the number of live births at very low gestational ages, most of whom die soon after birth, increased significantly between 2014 and 2017. In fact, the neonatal mortality rate in babies born at term—that is, after at least 37 weeks’ gestation—decreased by 19% and the stillbirth rate in term babies decreased by 31.6% between 2010 and 2018. The pre-term birth rate remains 8%. Clearly, the achievement of our ambition depends significantly on reducing those pre-term births.

[Gareth Thomas (Harrow West) (Lab/Co-op)]

I apologise to the Minister and to the House for missing the early part of her remarks. On the statistics she has just commented on, is it not the case that we are going backwards in our progress on neonatal deaths? Is it not also true that there is a marked difference in more socially deprived areas since 2014? Does that not suggest that significantly more investment in this policy area is needed urgently, particularly in those areas where social deprivation is most stark?

[Caroline Dinenage]

The hon. Gentleman is right. We are still going forwards, although nowhere near as quickly as we would want to be going, but there have been some backward steps along the way. A lot of the changes that we have introduced have not yet had the opportunity to take full effect, and I am hopeful that as we move forward we will begin to see neonatal death rates reduce. As I just mentioned, when babies are born at or close to full term, the rate has dropped significantly. It is pre-term births that are causing a lot of concern for us, which is why we are putting continued effort into this issue.

In the long-term plan that was published in January, the NHS committed to accelerate action to achieve the national maternity safety ambition. Maternity services will be supported to implement fully an expanded “Saving Babies’ Lives” care bundle across every maternity unit in England by 2020. The development of specialist pre-term birth clinics will be encouraged in England, which should help very much.

NHS England and NHS Improvement will continue to work with midwives, mothers and families to implement the continuity of carer model, so that by March 2021 most women will have a named individual caring for them during pregnancy and birth and postnatally. That will help to reduce pre-term births, hospital admissions and the need for intervention during labour. It will also improve women’s experience of care.

Let me return to bereavement care. Members will be aware that for three years the Department of Health and Social Care has provided funding to the charity Sands for it to work collaboratively with other baby loss charities and the NHS to develop and pilot the roll-out of a standardised national bereavement care pathway for parents who have experienced baby loss, whether through miscarriage, termination after receiving a diagnosis of foetal abnormality, stillbirth, neonatal death or, indeed, sudden infant death. The pathway sets out nine standards for good bereavement care and has so far been adopted by 40 trusts. I hope that many more will follow.

[Sarah Champion (Rotherham) (Lab)]

I was contacted by one of my constituents, whose baby died in July at 26 days. She still, now, has been unable to get counselling support. Will the Minister look into giving clear guidance to clinical commissioning groups to make sure that the National Institute for Health and Care Excellence guidance on bereavement is there for everyone?

[Caroline Dinenage]

Yes. That guidance is there. My heart goes out to the hon. Lady’s constituent. If she wants to get in touch with us about any lack of access to care and support, we will almost certainly be able to help and look into it for her.

Bereaved parents need time to grieve. I take this opportunity to congratulate my hon. Friend the Member for Thirsk and Malton (Kevin Hollinrake)—I do not think he is present—who last year had a fantastic private Member’s Bill. As a result, from 2020 the Parental Bereavement (Leave and Pay) Act 2018 will give all employed parents a day-one right to two weeks’ leave if they lose a child who is under the age of 18 or suffer a stillbirth from 24 weeks of pregnancy.

Finally, the NHS commits in the long-term plan to improve access to and the quality of perinatal mental healthcare for mothers, their partners and children, by increasing access to evidence-based care for women with moderate to severe perinatal mental health difficulties and personality disorder diagnosis. We also want to increase access to evidence-based psychological support and therapy, including digital options in a maternity setting; the development of maternity outreach clinics, as I have already mentioned, that will integrate maternity and reproductive health; and psychological therapy for women experiencing mental health difficulties directly arising from or related to their maternity experience.

In conclusion, the Government and NHS are fully committed to reducing the number of babies who die during pregnancy or in the neonatal period, and to providing that absolutely fundamental and much-needed support for bereaved families.

Social Care Funding

Caroline Dinenage Excerpts

Tuesday 1st October 2019 Westminster Hall

[The Minister for Care (Caroline Dinenage)]

It is a great pleasure to serve under your stewardship in this important debate, Sir Charles, and I share the sentiment of many Members across the House in congratulating the right hon. Member for Twickenham (Sir Vince Cable) on securing it. I also wish to highlight the incredibly constructive and collaborative nature of the way that he opened this debate. He was right to highlight from the outset that the only way to find a solution to this thorny issue, which is not unique to our country but a challenge faced by countries around the world, is by working in a co-operative, collaborative, and constructive way.

The right hon. Gentleman rightly pointed out that successive Governments have tried and failed to deal with this thorny issue, and despite everybody recognising the need for consensus, for too long it has been weaponised. We have heard expressions such as “dementia tax” or “death tax” used by all parties over the years. That has not been helpful, and it is one reason why different parties and Governments have placed this issue in the “too difficult” pile. He was also right to highlight the sense of urgency, because we no longer have the luxury of time to place the issue in that pile.

Over the past couple of years the Government have responded to huge short-term pressures, and funding for local government has gone up, as opposed to being cut, as outlined by Labour Members. However, we must set out our long-term plans, and consider how to solve the thorny issues of long-term funding for adult social care. At the moment, one in 10 people face what we might call catastrophic care costs in excess of £100,000, and potentially lose their home to pay for their long-term care.

I thank hon. Members across the House who have spoken with great passion and, in most cases, an enormous amount of collaboration and desire to work together to find solutions to these problems. I join them in recognising and paying tribute to the carers, nurses, social workers, and unpaid friends and families of those who require care. Every day, carers work tirelessly to ensure that people live dignified and fulfilling lives, regardless of how tough that challenge is. In doing this job and fulfilling this role, it has been my greatest privilege to meet those people on an almost daily basis and hear their stories. The hon. Member for Kingston upon Hull West and Hessle (Emma Hardy) said that carers must be accorded the status that they deserve, and given resources to drive the right amount of quality, and she was absolutely right. She was wrong, however, to say that we have lost caring from the caring system. People may be driven to that point in some respects, but they care and they do so in the most beautiful way.

[Jamie Stone]

May I associate myself with what the hon. Member for Plymouth, Sutton and Devonport (Luke Pollard) said about young carers who go home and look after parents who may have an alcohol or drug dependency problem? In my constituency an organisation called The Young Karers East Sutherland helps to support them. My mother died four years ago, but she was cared for at home very well. The younger carers—those who had left school and gone into the profession for the first time—were the most amazing. They embraced this profession, and one could see they had a vocation. I suggest that one way to sort out this problem is to encourage the recruitment of young people by giving them taster sessions and letting them come from school and see what it is like. Often, we might get converts who will stay in the profession for life.

[Caroline Dinenage]

That is an excellent intervention, and the hon. Gentleman is right to say that we must do more to recognise and support young carers. The hon. Member for Plymouth, Sutton and Devonport said that we must do more to help schools to identify young carers, and that was a key part of the carers action plan that was announced last summer. A young carers’ takeover day of Parliament is planned in the months ahead: every MP across the country will be encouraged to invite a young carer from their constituency, which will give us a real in-depth understanding of what an amazing job young carers do.

We all recognise the challenges that the social care system faces. As a population, we are getting older: by 2040, one in four people in the UK will be 65 or over, as the right hon. Member for Twickenham pointed out. It is also important to understand that social care is not just a service for older people; the number of people under 65 who have carers is growing and accounts for more than half of social care spending. That can have quite a disastrous impact on local authority budgets, as the hon. Member for Plymouth, Sutton and Devonport pointed out. I will certainly take forward the points that he made.

These long-standing trends put increasing financial pressure on local authorities. In response, we have taken steps to ensure that the social care system has the funding to meet urgent challenges in the short term. In 2017, we announced an additional £2 billion in grant funding for social care, which we supplemented with a further £650 million in the 2018 Budget. Councils have responded by increasing their spending on social care, which has risen in real terms in each of the past three years.

[Bambos Charalambous (Enfield, Southgate) (Lab)]

Will the Minister give way?

[Caroline Dinenage]

I will make some progress, if the hon. Gentleman does not mind.

As a result of our investment in social care, 65% of local authorities were able to increase home care provision in 2017-18. Local authorities have increased the average fee paid for older people’s home care by 4.7% in 2018-19, bringing some much-needed stability to the provider market. I am very pleased that the Care Quality Commission has rated 84.1% of social care settings as good or outstanding.

I am delighted to say that in our most recent spending round we announced further investment in adult social care. We will provide councils with access to an additional £1.5 billion for adult and children’s social care next year, including £1 billion in new grant funding over and above the £2.5 billion of existing social care grants. In the spending round, we confirmed that all the existing funding streams would be maintained next year—hard-wired into the Budget, if you like. The Government will also consult on a 2% adult social care precept that will enable councils to access a further £500 million. This increase in funding is part of the biggest increase since 2015 in overall core spending power for local government: it will increase by 4.3% in real terms next year.

The new funding from the spending round will support local authorities in meeting the rising demands that they face, while helping them to continue to stabilise the wider social care market. This additional funding is the first step towards putting adult social care on a fairer and more sustainable footing. We have already started preparing for the multi-year spending round due next year.

The challenges facing social care are not purely financial, as hon. Members across the parties, including my hon. Friends the Members for Central Suffolk and North Ipswich (Dr Poulter) and for Newton Abbot (Anne Marie Morris), have said. It is important to point that out, because stakeholders across the sector tell MPs: “Even if money were no object, we would not necessarily continue to provide this service in the current system.” The current system is not working in so many respects, and it is not working properly for some of our most vulnerable citizens, which is why we are continuing to support the system through a programme of sector-led improvements to help councils to make better use of funding to deliver high-quality personalised service, with more than £9.2 million committed by the Department in 2019-20.

We are also breaking down barriers to encourage much better integration of health and care, and we are looking at what more we can do to support the workforce and carers, as I have mentioned. In terms of integration, the better care fund has helped to enable much better co-operation between health and social care partners at a local level. It has also been instrumental in reducing delayed transfers of care, which has been mentioned: they have decreased by 2,147 since February 2017. We are looking at how we can use the fund to drive better integration.

My hon. Friend the Member for St Ives (Derek Thomas) spoke about bed vacancies and people stuck in hospitals. There is a lot more integration going on between care providers and health settings that are using those beds to provide the step-down care and discharge to assess that we want to see.

[Dr Poulter]

The better care fund and how it is applied on the ground locally varies across the country. Overall, the impact has been disappointing in terms of the ambition for that fund. I urge my hon. Friend to look at why there are two different commissioning systems for the NHS and social care. Unless we get that right, we are not going to drive improved integration or more personalised care.

[Caroline Dinenage]

My hon. Friend is right to say there were teething problems, but in the most recent reporting cycle, 93% of local areas agreed that joint working had improved as a result of the better care fund. We want to use it to drive much better integration and to look at how we undertake more joint commissioning in future.

We are committed to working alongside all partners in adult social care to attract and support a growing workforce with the right skills and the right values to deliver quality and compassionate care. Earlier this year, we launched the “Every Day Is Different” national adult social care recruitment campaign to raise the profile of the sector. We have secured a further £3.8 million for the next wave of that campaign, which will start later this month. We fund Skills for Care to support the sector in recruitment and retention.

[Rachael Maskell]

Will the Minister give way?

[Caroline Dinenage]

I do not have time. We also fund the workforce development fund, and social care employers can bid for this funding to pay for their staff to gain training qualifications at all levels.

There were lots of questions raised across the Chamber, and I want to deal with them all. The hon. Member for Totnes spoke about the impact of Brexit. As the Prime Minister has said, he wants our immigration system to help to attract the brightest and best talent from across the world. This includes delivering an Australian-style points-based immigration system as a first step. The Home Secretary has commissioned an independent migration advisory committee to review this and the appropriate salary threshold. Clearly, we want to attract people to work in adult social care.

We are aware that the system is already under pressure and recognise that EU exit could add to this. We have been working on this for a long time alongside partners, including ADASS, the Local Government Association and local authorities, to ensure robust contingency plans are in place. [Interruption.] I am going to have to make progress as I will have to sit down in a second.

There is still much more to do. The funding announced in the spending round is a down payment on much more fundamental reforms to social care that we need to introduce. As the Prime Minister said on the steps of Downing Street, the Government will set out plans to fix the crisis in social care once and for all, to give every older person the dignity and security they deserve. We want to ensure that nobody has to sell their home to pay for care. The Government will not shy away from the long-term challenges that face social care. Our proactive approach to funding and reform means that we will ensure that our social care system can respond to the challenges that lie ahead with confidence that the most vulnerable in our society will be able to live with dignity and respect and receive the care they deserve.

Variant Creutzfeldt-Jakob Disease (vCJD) Risk Reduction Measures: Revised Advice

Caroline Dinenage Excerpts

Monday 9th September 2019 Written Statements

[The Minister for Care (Caroline Dinenage)]

I would like to inform the House that the Government, along with the Scottish Government and the Welsh Government, will be updating some specific variant Creutzfeldt-Jakob disease (vCJD) precautionary measures in England, Scotland and Wales.

In 2004, the Government were advised to establish precautionary vCJD risk reduction measures in the UK, acknowledging the unknown risks of vCJD to recipients of UK plasma and platelets. A number of measures were introduced, such as the introduction of leucodepletion of all blood components and the deferral of previously transfused donors. These specific risk reduction measures are highly effective and will remain in place to maintain the safety of the UK blood supply.

An additional risk reduction measure adopted involved the treatment of patients born on or after 1 January 1996 with imported plasma and/or apheresis platelets. This was to reduce the risk of exposure to components that were thought to have potentially increased their risk of developing vCJD.

Over the last 15 years, accrued scientific evidence has indicated that the risk of vCJD through the transfusion of UK plasma or platelets is much lower than initially thought; there have been no known transfusion transmissions of vCJD from any blood components since the leucodepletion process was introduced. In March 2019, the independent advisory committee for the safety of blood, tissues and organs (SaBTO) reviewed the scientific evidence and operational practices, engaged with stakeholders, and recommended that some specific risk reduction measures, requiring the use of imported plasma and apheresis platelets for individuals born on or after 1 January 1996 and/or with TTP, be withdrawn.

SaBTO’s final advice has been published on the gov.uk website, providing a comprehensive analysis of the risk attributed with updating these vCJD risk reduction measures. This advice is available online at: https://www. gov.uk/government/collections/sabto-reports-and-guidance-documents.

Upon receiving this expert advice, the Minister for Care has approved the use of domestic plasma and pooled platelets for patients born on or after 1 January 1996 or with TTP. Other risk reduction measures will remain in place, including leucodepletion, deferral of previously transfused donors and a ban on the manufacture of plasma derived medicinal products from plasma sourced in the UK.

NHS Blood and Transplant already sources 94% of plasma from UK donors and increasing domestic plasma use will provide further benefits relating to equitable provision of blood components, reduced operational complexity for hospitals and increased accessibility at the point of use. Clinicians who wish to prescribe and source commercial imported plasma products for patients, based on patient need and clinical preference, will continue to be able to do so in accordance with local and national guidelines.

The Minister for Care has now directed NHS Blood and Transplant (BT) to begin increasing domestic plasma acquisition in England through a managed, incremental transition. The Scottish Government and the Welsh Government have also asked their respective blood services to begin implementing SaBTO’s recommendation. In Northern Ireland, any decision on SaBTO’s recommendation to update vCJD risk reduction measures will be deferred until a Minister is in post.

[HCWS1821]

Oral Answers to Questions

Caroline Dinenage Excerpts

Tuesday 23rd July 2019 Commons Chamber

[Eleanor Smith (Wolverhampton South West) (Lab)]

11. What recent estimate he has made of the number of people unable to access social care services.

[The Minister for Care (Caroline Dinenage)]

All councils have a statutory duty to look after people’s care and support needs in their areas. In total, between 2016 and 2017, and in 2019-20, the Government have given councils access to £10 billion more social care funding.

[Afzal Khan]

Given that the Government have promised a spending increase for the NHS in the regions, is the Minister aware that at the current funding levels, Greater Manchester Health and Social Care Partnership will be operating on a predicted deficit of £2 billion by 2021? Will she advise on what work has been done in partnership with the GMHSCP to avoid this huge deficit?

[Caroline Dinenage]

There is no doubt that the system is under pressure, but that is why the Government have been putting an enormous amount of money in and giving councils access to additional funding to be able to address the growing need—up to £10 billion over the past three years. We know that people are living longer and living with much more complex conditions. This situation is only going to get worse, so we do need to find a more sustainable way to deal with it in the long term. The hon. Gentleman will be interested to know that Manchester will receive an additional £42.9 million for adult social care funding in 2019-20.

[Eleanor Smith]

Figures from the Care and Support Alliance and Age UK show that at least 1.4 million older people in England are not receiving the care and support they need. We know that this figure will be much, much higher owing to the number of working-age disabled people who are being denied the care and support they need to lead better lives. Speaking as co-chair of the all-party parliamentary group on adult social care, how much longer do we need to wait until the Government publish the long-awaited Green Paper on social care and finally start to show some much needed leadership in this vitally important area of public policy?

[Caroline Dinenage]

First, I pay tribute to the hon. Lady for her work in the APPG on adult social care. It is really important that we have an APPG that represents this really important issue. As I said, the fact that we have an ageing population is a growing issue that we have to face as a nation, and, in fact, as a world. Her area of Wolverhampton will receive an additional £22.1 million for adult social care in 2019, but we know that that is not a long-term solution and we will be publishing a Green Paper at the earliest opportunity.

[Martyn Day (Linlithgow and East Falkirk) (SNP)]

The Government’s utter chaos over Brexit has already impacted on recruitment in the social care sector. Scottish Care told the Scottish Affairs Committee that providers have lost 67% of their intake from the European economic area. The fact is that this Government’s actions are putting the health of the sick and elderly at risk. Will the Government make an assessment of how the staffing crisis in social care is impacting on the rate of hospital admissions?

[Caroline Dinenage]

The hon. Gentleman is right: we do have a number of vacancies—a large number of vacancies—in adult social care. That is why, earlier in the year, the Government announced a recruitment campaign, “Every day is different”. It ran for a few months, with enormous success. There have been 14% more apply clicks on the relevant Government jobs site as a result, so we have just announced that we are going to expand and extend that recruitment campaign, with an additional £4 million of funding.

[Barbara Keeley (Worsley and Eccles South) (Lab)]

Among those most affected by lack of access to social care are the 2,300 autistic people and people with learning disabilities stuck in inappropriate in-patient units because of a lack of funding for community placements. Labour, my party, has pledged to spend £350 million per year to support moving as many of those people as possible into community placements. I note that the Health and Social Care Secretary actually pledged extra funding for social care if he became Prime Minister, so will the Care Minister tell us if he now promises to match Labour’s pledge and ensure that autistic people and people with learning disabilities can live in homes, not hospitals?

[Caroline Dinenage]

The hon. Lady is absolutely right. One of the biggest issues we have had with people with learning disabilities and autism ending up in in-patient settings is a lack of community provision. That is why the NHS long-term plan commits to an extra £4.5 billion a year for primary and community health services, and local areas will be expected to use this investment to develop the sort of specialist services and community crisis care that will help divert people away from in-patient care settings.

[John Howell (Henley) (Con)]

8. What steps his Department is taking to help prevent mental health illness among young people.

--- Later in debate ---

[Kerry McCarthy (Bristol East) (Lab)]

15. What additional funding he plans to allocate to the NHS to reduce the number of people with autism and learning disabilities held in in-patient settings.

[The Minister for Care (Caroline Dinenage)]

The NHS long-term plan commits to an extra £4.5 billion a year for primary and community health services by 2023-24. Local areas will be expected to use part of this investment to develop specialist services and community crisis care to reduce avoidable admissions and lengths of stay for autistic people and those with learning disabilities.

[Kerry McCarthy]

I do not know whether the Minister has seen the report from the Children’s Commissioner, but it says that the number of children with autism or learning difficulties in mental health hospitals has doubled in recent years. Many are very far from home. Their parents are not consulted properly on their care, and they are in for much longer than they need to be. What proportion of the money that she mentions will go towards trying to ensure that children can have support in their home, so that they are not in this situation?

[Caroline Dinenage]

The hon. Lady has hit on a really important point. The truth is that a lot of children who end up in an in-patient setting are not diagnosed with autism or a learning disability until they are there; they normally come in on a mental health diagnosis. There are a few points to make here. One is on making sure that early intervention is there as early as when a child is in school. That is why the Government have made a commitment to having mental health support available from a very early age, in schools. This is also about making sure that families do not get to crisis point, and that the investment is there in the community, so that children get the support that they need at every possible step.

[Gordon Henderson (Sittingbourne and Sheppey) (Con)]

16. What steps he is taking to reduce the number of missed GP appointments.

--- Later in debate ---

[The Minister for Care (Caroline Dinenage)]

I thank the hon. Gentleman for raising that, because one of the things that I have learned in this role is that working in care should never be described as unskilled. It is probably one of the most skilled professions, and it requires people with exactly the right principles and values to deliver it. We are clear that people should be paid a fair and decent wage, and I am more than happy to meet the hon. Gentleman to discuss it further.

[Helen Goodman (Bishop Auckland) (Lab)]

The Minister with responsibility for mental health is a very sympathetic person. Unfortunately, that does not seem to translate into action. Our clinical commissioning group has stopped funding the voluntary sector to provide counselling, and now it is taking counselling services out of GP surgeries as well. Will she look into that?

--- Later in debate ---

[Thelma Walker (Colne Valley) (Lab)]

Can the Secretary of State confirm that the Care Quality Commission has recently inspected Calderdale and Huddersfield NHS Foundation Trust, and that patient safety was raised as an issue during that inspection? If that is the case, what action is he taking?

[Caroline Dinenage]

Clearly, patient safety is a massive priority for the Government. I do not know the exact details of the site that the hon. Lady is talking about, but if she would like to drop me a line, I will definitely find out and get back to her.

Lower Limb Wound Care

Caroline Dinenage Excerpts

Tuesday 23rd July 2019 Commons Chamber

[The Minister for Care (Caroline Dinenage)]

It has sometimes been said that MPs in this House speak about things they do not know about, and sometimes MPs speak about things about which they have only a little experience, but I do not think I have ever had the honour of responding to a debate where a Member has spoken with so much current, relevant experience. I must congratulate the right hon. Member for Cynon Valley (Ann Clwyd)—

[Ann Clwyd]

It is pronounced “Cun-on”

--- Later in debate ---

[Caroline Dinenage]

I do apologise—I went to university in Wales, so I should get that right.

I must congratulate the right hon. Lady, first, on securing the debate, and, secondly, on making such mammoth, gargantuan efforts to be here. She did that with some help from her friends on the 12th floor of St Thomas’s, the experts in the Gallery—I am going to have to be careful what I say. She is nothing short of an inspiration to all of us, both as a long-standing Member of Parliament who is greatly respected in this place and as a human being. We are so grateful for the fact that she has made it here today, and we wish her a very speedy recovery. We look forward to her being back here to monitor every development that the Department can bring about in the context of wound care and how we look after people in hospital more generally. She is a great inspiration to all of us, and I thank her so much for raising this issue in the House.

I think we all recognise the importance of ensuring that patients have access to high-quality lower limb wound care. As a Government, we are absolutely committed to ensuring that people receive the right care in the right place at the right time, whether through acute services, a local GP or services based in the local community. As the right hon. Lady knows, wound care treatment is a vital service which, during the initial period, is predominantly provided by a community nurse. That crucial provision offers relief to those with leg ulcerations or diabetic foot ulcerations and pressure ulcers.

As Members will know, venous disease is the most common type of leg ulceration, and can cause great distress and suffering to patients and their families. The right hon. Lady spoke powerfully of the pain that she has suffered, and that others suffer, as a result of the condition. I think it is important to keep that in mind because of the side effects that having to live with enduring pain for long periods can have on a person’s emotional and mental health and wellbeing.

Our priority is for leg ulcers of this type to be treated early and in the community when that is possible, without the need for further hospital admissions or GP appointments. I think that that preventative approach is right for patients and for the system. It is key for wound care to be delivered effectively and efficiently. Good wound care not only saves patients from distress and suffering, but gives nurses more time to deliver other important services, and alleviates pressure on acute services. That is why NHS England and NHS Improvement have commissioned the Academic Health Science Network to develop and deliver a national wound care strategy programme for England, which aims to improve the quality of wound care provision. It is a comprehensive programme, which covers improving prevention of pressure ulcers, wound care of the lower leg, and management of surgical wounds.

The programme’s work will be informed by the following priorities. First, it will improve patient experience and outcomes by developing national clinical standards of care and a more data-driven approach. I know that the right hon. Lady is very keen on that. Secondly, it will work with industry to ensure that the right wound care products are reaching patients at the right time through the development of a much more robust supply, delivery and distribution model. Thirdly, it will aim to improve the current patchy provision of wound care training—of which I know the right hon. Lady is well aware—and the inconsistencies in the availability and quality of educational resources. As well as improving the care provided by healthcare professionals, that will allow patients to become more capable in self-care.

The right hon. Lady raised several issues that I should like to follow up. Let me first pay tribute to the work done by the Lindsay Leg Club Foundation in relation to community-based leg ulcer care. I am pleased that the committee of the lower limb clinical workstream of the national wound care strategy programme includes members of the foundation. As the right hon. Lady said, leg clubs are organised by the local community rather than health providers, but leg club nursing teams are employed by NHS local provider services, clinical commissioning groups and GPs. That is why it is so important for everyone to work together to support people as much as they can in the community. I can imagine that when this condition starts it is so painful that people can feel extremely alone and isolated, and the provision of leg clubs and other support mechanisms in the community, to offer the information, advice and support that they need, can help them to stop feeling that isolation and fear.

I also join the right hon. Lady in welcoming the all-party parliamentary group on vascular and venous disease. It is important for us to have all-party parliamentary groups which really recognise conditions of this kind, and which are doing their best to push the Government, and us in the Department of Health and Social Care, to do everything we can to support people who suffer from them.

The programme that I was talking about started its work in late 2018, and since then has brought together a range of experts. It has recruited over 500 stakeholders from a very broad range of private and public sector organisations to its stakeholder forum, and it is important that we have people with real experience from across the country taking part in this and influencing the decisionmaking. They aim to deliver their recommendations by the end of the 2019-20 financial year. We look forward to receiving them and the positive impact that they will have on patients’ lives. This is just for England, but NHS England is in communication with wound care leads in the three other devolved nations to ensure that they are sharing this learning across the piece.

The research in this area is also very important. The Department funds research into all aspects of human health through the National Institute for Health Research at the level of about £1 billion a year, and the NIHR has funded a number of studies focusing on lower limb wound care, including venous leg ulcers and vascular problems. A five-year funded programme on complex wounds comprised 11 new and updated reviews of the existing literature, a survey and interviews with people with complex wounds, their carers and health care professionals. There has also been a series of venous leg ulcer studies using randomised control trials to investigate the clinical and cost effectiveness of new versus traditional venous leg ulcer treatments from types of compression bandage through to compression hosiery to larval therapy.

The right hon. Lady also spoke about the importance of having the right staff, expertise and medically trained people to be able to deliver the care, and it is no secret that community nurses are a fundamental part of our health system; they provide vital services that ensure patients are treated where they are most comfortable, which often is in their own home, and that they are supported to manage their conditions and to live independently. To help deliver our vision for community services, we are investing an extra £4.5 billion a year to spend on primary medical and community health services by 2023-24. The key to delivering the long-term plans and vision is ensuring that we have the right nursing numbers, particularly in the community, and that is why the interim NHS people plan is prioritising taking urgent accelerated action to tackle some of the community nursing vacancies. That will be done in a range of different ways, including increasing supply through under- graduate nursing degrees, clearer pathways into the profession through the nursing associate qualification and apprenticeships, and tackling some of the misconceptions about the role of community nurses, which sometimes deter people from entering the profession. In addition, in May 2018 we announced £10 million for incentives to postgraduate students to go on to work in some of the areas that we care very passionately about and where we want to recruit the best people, such as mental health, learning disability and district community nursing roles.

[Jim Shannon]

I am pleased to hear this very positive response from the Minister. In Northern Ireland we have a very good community nursing programme that is delivered through the social care services. It cares for those who need care and a change of dressing for their wounds every day. The Minister referred to contact with the regions and devolved Administrations; will she contact the Northern Ireland Assembly and the permanent secretary of the Department of Health, Richard Pengelly, so they can give some idea of what we do there?

[Caroline Dinenage]

The hon. Gentleman is always full of brilliant ideas and we will only move forward as a nation if we share best practice and the expertise gained from different parts of our country. So I would be very keen to speak to his colleagues at the Northern Ireland Assembly and see if we can gain any learning from that.

[Jamie Stone]

I could not possibly let the occasion pass without commenting. Can I take it that that promise will be extended to the Scottish Parliament and the Scottish Government? The issue we have heard about today is no less a problem in Scotland.

[Caroline Dinenage]

Yes. We do not discriminate. We are keen to talk to everyone to get the best possible learning so that patients up and down the country can benefit from all the expertise that is available.

In thanking the right hon. Member for Cynon Valley for making the supreme effort to be here today, I reassure her that both the Government and the NHS recognise the importance of ensuring that patients have access to high-quality lower limb wound care and will continue to support the work of the national wound care strategy programme for England on improving the quality of wound care, including lower limb wound care, in the country. I thank her once again for being here to make her case so incredibly powerfully. I wish her a speedy recovery and send her all our love from this House.

[Madam Deputy Speaker (Dame Rosie Winterton)]

I echo the Minister’s warm comments about the right hon. Member for Cynon Valley (Ann Clwyd). We are all deeply impressed to see that she has come from her hospital bed on the 12th floor of St Thomas’s to raise this important issue in the House. I have known and been a friend of the right hon. Lady for more than 30 years and I know her courage and resilience so it is not a great surprise that she has done so, but nevertheless we are hugely impressed. Like the Minister, on behalf of the whole House, I wish her a speedy recovery and look forward to having her back full time in September.



Question put and agreed to.

Batten Disease: Access to Drugs

Caroline Dinenage Excerpts

Tuesday 16th July 2019 Commons Chamber

[The Minister for Care (Caroline Dinenage)]

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 those 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—

[Andrew Griffiths]

On a point of order, Mr Speaker. This important debate is about whether this drug is going to be available for these young children, and you will share my concern that we are not going to get the answers we want because it is supposedly prevented by a judicial review. Can you rule on whether we should be able to have the information we seek in this debate for the parents who are watching?

[Mr Speaker]

I am extremely grateful to the hon. Gentleman for his point of order. He anticipates me, because his discernment is such that he will have observed me in conversation with the Clerk at the Table. Let me say, for the avoidance of doubt, that the content of the Minister’s reply is, of course, a matter for her, and it is not something with which I would seek to interfere. That is not for me.

However, for the purposes of clarification, I want to make this point. I am not aware that this matter is sub judice, as I have not received prior notification that it is. I am not aware that it is, I have not been informed that it is, and the Clerks have not been informed that it is. If it is not sub judice, nothing whatsoever precludes the Minister from commenting on this case. If it is sub judice, as colleagues will know, it is within the competence —I use that term in the technical sense—of the Chair to waive the sub judice rule, which it would most certainly be my instinct to do.

What the Minister says is a matter for the Minister, but it would not be right, as far as I can tell, to say that it is not possible, in a legal sense, for the Minister to comment on this matter. The Minister is the Minister, and the Minister’s answer on the specifics is sought. If the Minister wishes to proffer that answer, she can do so.

[Caroline Dinenage]

Thank you, Mr Speaker. You have made my position even more difficult. I am very grateful for your advice.

The advice I have been given by the legal team within the Department of Health and Social Care is that anything I say could potentially influence the outcome of judicial proceedings that may be ongoing.

[Mr Speaker]

The Minister is nothing but solicitous and courteous. I have found her unfailingly courteous in her dealings with me over many years, and I certainly do not seek to make life difficult for her, but my concern is with the rights of Members of this House and of the people they are here to represent.

Frankly, if lawyers within the Department of Health and Social Care are of that view, it would have been courteous to consult the officials of the House. As far as I am aware, the officials of the House have not been consulted, and I have not been consulted about this matter. I am simply saying that if the Minister wishes to respond to the specifics, which manifestly the hon. Member for North East Somerset (Mr Rees-Mogg) was going to raise—that is the rationale for the debate—it is perfectly open to her to do so.

If the hon. Member for North East Somerset is not able to secure satisfaction on this occasion—the Minister must judge what she wants to say in response—and if he wishes to pursue the matter further in another Adjournment debate, during the course of waiting for which further time will unfortunately have been lost, that debate will be available to him. I am determined that this matter will be effectively raised in the Chamber of the House of Commons by the hon. Gentleman and by other Members.

[Caroline Dinenage]

Thank you for clarifying that, Mr Speaker. I very much share the passion that I detect my hon. Friend the Member for North East Somerset feels about this issue, which I know is shared by Members on both sides of the House.

[Mr Jim Cunningham (Coventry South) (Lab)]

On the basis of what Mr Speaker has said, surely if those who are taking this issue to the courts withdrew their challenge, or if the Minister gave them a satisfactory answer to help the hon. Member for North East Somerset (Mr Rees-Mogg), it would not be sub judice. The Minister has the power to do that.

[Caroline Dinenage]

I am very tempted to do so, but I would like to try to make progress on some of the things I can say, and then we can maybe move on to a more satisfactory conclusion.

[Andrew Griffiths]

On a point of order, Mr Speaker.

--- Later in debate ---

[Mr Speaker]

It is certainly open to the Minister to do so, and I think that it would, without question, be to the advantage of the House if such an oral statement were proffered before the House goes into recess. What I should say to the hon. Gentleman and to other colleagues is that, to my knowledge—forgive me, but I am dealing with this matter literally on my feet—the case has not been set down; it is not listed for court consideration. There are no current proceedings dated. Therefore, as we understand it—my advisers and I—it cannot be said to be sub judice. Sometimes a judgment might be made about the possibility of prejudicing a case—that is a wider consideration–but the real issue is: is it sub judice? Our answer, on the best information available, is that it is not, and so I think a statement would be helpful. Alternatively, if Members wish to exercise their ingenuity in raising important and of course legitimate points of order, and the Minister wishes in the meantime to consult her officials so that a full and detailed response on the specifics can be provided, that is open to her. I recognise that that might be challenging at such short notice and she may not wish to do that, but it would certainly be helpful to have a substantive response, preferably this evening, and a full oral statement before we go into recess. I would say to the House that I am giving the ruling that I am giving both on the basis of a decade’s experience as the occupant of the Chair and on the strength of top-quality procedural advice.

[Caroline Dinenage]

Thank you, Mr Speaker. I am very grateful—

[Mr Rees-Mogg]

On a point of order, Mr Speaker. My point of order follows on from what you said and I hope it may be helpful to the Minister in giving her a moment to reflect on what you have just said. I would express a broader concern on this sub judice question, because, as you rightly said, it is always the prerogative of this House to discuss what it wishes to discuss, regardless of what is going on in any court. The sub judice rule has only ever been a self-denying ordinance of this House, to feel that it should not trample on things that were immediately before another court, rather than something that can be enforced upon us. In that respect, we are different from any other place in the country—other than of course their lordships’ House—which would be subject to sub judice as a matter of law. We are subject to it only in so far as we feel that it is wise to be cautious and prudent, and not to interrupt another of the separated powers within our judicial system. Therefore, it seems to me that whenever Ministries decide to cite sub judice rules, it would be wise to have consulted Mr Speaker or one of the Clerks in advance, in order to have some clarity before the debate begins.

[Mr Speaker]

Yes, it is a matter of prudence on the part of the House of Commons; it is not a cloak behind which the Executive branch should seek to hide. I know that the Minister would not attempt to do so, but any advice that might be thought to be intended to allow that to happen would be ill viewed by right hon. and hon. Members, and most certainly by their constituents.

[Caroline Dinenage]

I take on board all the comments that you have made, Mr Speaker, and indeed that hon. Members have made. I need to go away and reflect on this. I would like to make some progress with what I feel confident to be able to talk about today, and then, if inspiration does not approach me from anywhere else in this Chamber in the next few moments, I will commit to coming back with a fuller response if that is possible before we break for recess, if that would be acceptable to you, Mr Speaker.

[Catherine McKinnell]

I thank you for your guidance on this issue, Mr Speaker. I wonder whether the Minister would accept that the legal action that is being discussed would be unnecessary if NHS England, the National Institute for Health and Care Excellence and BioMarin got around the table and resolved this issue. On the broader point, on 21 May I and a number of colleagues, including the hon. Member for North East Somerset, met the Secretary of State to discuss this issue. He has since written to me to say that he is

“doing all he can within the legal constraints to resolve this”

situation. I was therefore hoping that the Minister could clarify what exactly that means, and what progress is being made as a result of that meeting and the representations we have made today.

[Caroline Dinenage]

I know that the Secretary of State met the hon. Lady and other Members recently, and this is something that he cares about passionately. We are doing everything we can in the Department of Health and Social Care to try to move the position forward. The hon. Lady is right to say that had this issue been satisfactorily resolved, we would not be having this discussion at all, we would not be talking about legal proceedings and the situation would hopefully be a lot easier to resolve.

I have only a short amount of time left to be able to give some sort of response to my hon. Friend the Member for North East Somerset.

[Mr Rees-Mogg]

We have 40 minutes left, Mr Speaker, so we are not short of time.

[Mr Speaker]

No, we have plenty of time. We can continue until 7.30. [Interruption.] Oh yes, we have plenty of time. And of course, there will be an opportunity for either a ministerial statement or an urgent question between now and Thursday, so we have, if I may say so, bucket-loads of time to deliberate on this important matter. I know that that message will be extremely well received by the Minister.

[Caroline Dinenage]

Thank you, Mr Speaker.

The legal position, as I understand it, is that NHS England and NHS Improvement have been in discussions with the manufacturer BioMarin for some time to try to seek a deal that would enable NICE to recommend the drug for use on the NHS, but so far an agreement has unfortunately not been possible. As hon. Members know, and as I said at the beginning of my speech, NICE’s assessment is currently subject to an ongoing legal procedure. NICE has published its draft recommendation and was unfortunately unable to recommend the use of the drug, despite its meeting the criteria for consideration under the highest cost-effectiveness threshold. NICE has not yet re-published its final word on this issue, and that may provide more clarity. In the meantime, it is of course open to the company to enter into an agreement with NHS England that would make the drug cost-effective and would make the legal procedure unnecessary.

[Mr Jim Cunningham]

If NHS England got a satisfactory agreement with the drug manufacturer, would that have any bearing on the decision of the Secretary of State or on NICE?

[Caroline Dinenage]

I do not think it would contravene any legal recommendations if I were to say that if the manufacturer, NHS England and NICE were to get around a table and agree a satisfactory price, there would be no need for the legal challenge. In actual fact, the desperately poorly children we have heard about today would therefore be able to get the treatments that they desperately need.

[Catherine McKinnell]

Does the Minister share my concern that one reason why NICE turned down Brineura is that there is not enough long-term evidence about the drug’s effectiveness? That does prompt the question, which I am sure people at home would wonder about: how can we secure that long-term evidence when the treatment is so new—yet so effective, in my view—but is not even available on the NHS in this country? How do we ever find enough evidence to match the criteria that NICE is looking for?

[Caroline Dinenage]

That is a really good question, and I think that is one reason why NICE is looking again at its systems. It must be possible, because around 80% of new drugs are recommended for NICE approval and approved by NICE. It is clearly possible for new drugs to make it through even when they have not been around for a long enough period to see the very long-term consequences of their impact. It is really important in cases such as this, in which the opportunity—

[Andrew Griffiths]

On a point of order, Mr Speaker. I seek your advice, because we have a precedent for a situation that can arise on numerous occasions. In the nine years I have been in the House, I have heard of many debates in which right hon. and hon. Members have brought forward demands for treatments for rare diseases. We call the Minister to the Dispatch Box to answer—to be accountable. If we have a situation, going forward, where the Minister can claim sub judice, on advice from officials—it is not the Minister; she is taking advice from her Department—and be allowed to hide behind that cloak of anonymity and prevent the House from doing its job, which is to establish the facts and find out the truth behind the matter, that clearly prevents the House from being able to do its job.

You would share my concern, Mr Speaker, that that would prevent Members in this House from serving their constituents in a way that they would be expected to do. Therefore, can you ensure that you will go away today and look at this situation and make sure that, if this procedure has gone wrong, Departments are told very clearly that they cannot hide behind sub judice and that they must be candid with this House, regardless of the advice they have been given by officials.

[Mr Speaker]

That is a most helpful point of order from the hon. Gentleman, to which, essentially, the answer is a simple yes. I will happily go away and reflect on how Departments might usefully be advised to proceed in these matters. Beyond that, there are two points. First, as I have been advised, the matter is not sub judice. It has been suggested to me by a very constructive member of the Treasury Bench that advice to the effect that the case might be sub judice was proffered, though not to the particular Clerk whom I have been consulting, but that advice was not judged to be correct. Put simply, as far as we can see, the matter is not sub judice.

Secondly, however, and this is an extremely important point in the context of the specific debate that the hon. Member for North East Somerset has secured, the issue is that of ministerial intervention, and therefore whether or not the case is sub judice—I repeat that I am advised that it is not—the matter of ministerial intervention is manifestly one for Ministers, and it is therefore a matter upon which a Minister from the Bench can comment and would widely be expected to do so. Frankly, this question of the legal status is not germane to the capacity of a Minister to respond to the specifics of the debate. That is the situation.

[Caroline Dinenage]

Thank you, Mr Speaker. I do apologise for the further confusion that is here today. We are trying to seek further guidance on this—

[Mr Rees-Mogg]

Will my hon. Friend allow me?

[Caroline Dinenage]

In a moment.

The advice that I have been given is that I have to be very careful on the legal procedure because of the fact that it is not a legal procedure between individuals and the Department, but between individuals and NICE. I do not want anything that we say potentially to negatively impact on a family’s opportunity to get these very important drugs for their children.

[Mr Speaker]

Very important decisions are subcontracted to NICE, but policy responsibility, as the hon. Member for North East Somerset has pointed out, is that of the Government. We do not have Government by NICE; we have Government in the case of health policy through the Department of Health and Social Care.

[Caroline Dinenage]

I give way.

[Mr Rees-Mogg]

I am grateful to the Minister for giving way. I understand that discussions have been rapidly going on while we have had points of order and various other things happening in this Chamber. I am not sure whether this is orderly, Mr Speaker, but I happened to notice that there has been a return to the officials’ box of advisers. I wonder whether inspiration might now be forthcoming and heading in the direction of the Minister and whether I am now giving time for such advice to be passed through, or whether the telephone calls that I heard were taking place have not been as fruitful as I might have hoped.

[Mr Speaker]

I am not in a position to know that immediately for the simple reason that the Speaker does not possess eyes in the back of his head, and I have been focusing on the hon. Gentleman, the Minister and other colleagues, rather than on the occupants of the officials’ box. I have seen a note that has been circulating and a Minister is attempting to assist one of my advisers. I assume the Minister is attempting to do so on the basis of information provided. Whether there is something that is so valuable that the Minister in question is about to furnish the answering Minister with it, I do not know, but I am allowing a suitable opportunity for that missive to be passed to the Minister for Care, who is, of course, entitled to digest and reflect upon its contents and to decide in the light thereof how she wishes to continue, but I repeat that there is no shortage of time. I am very grateful to the Minister for her characteristic courtesy.

[Caroline Dinenage]

We are in a difficult position because the advice that has been forthcoming from the Department of Health and Social Care is not the same as the advice being given by the brilliant Clerks here. That puts me in a very difficult position, which is why I would like to commit to returning to the House with a statement once I have been able to pursue this matter a little bit further.

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.

--- Later in debate ---

Motion made, and Question proposed, That this House do now adjourn.—(Jackie Doyle-Price.)

[Caroline Dinenage]

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 processes 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.

[Andrew Griffiths]

I thank the Minister for the honourable way in which she has played a straight bat in what is a very sticky wicket; I am grateful to her for that. She mentioned that she was prepared to come back and make a statement to the House, for which I think we are all grateful. Would she just confirm whether she intends to make that statement before the House rises for the summer recess?

[Caroline Dinenage]

Yes, I will come back and make that statement before the House rises for the summer recess, with the correct legal recommendations.

The NICE review of its methods and processes has now begun. That will be quite helpful for some hon. Members who are questioning whether those processes are as they should be. Although I do not think it would not be appropriate for me to pre-empt the review by commenting in detail on its scope, I can assure hon. Members that it will be wide-ranging and will be carried out with full consultation with stakeholders.

My hon. Friend the Member for North East Somerset spoke about access to the new drug Brineura for his constituent Max. NICE is currently developing recommendations for the NHS on the use of Brineura through its highly specialised technologies programme for the evaluation of drugs for the treatment of patients with very rare diseases. It has not yet published that final guidance. I understand that NHS England and NHS Improvement have been in discussions with the manufacturer of Brineura, BioMarin, for some time to seek a deal that would enable NICE to recommend the drug for use on the NHS, but an agreement has unfortunately not been possible so far. As I said at the beginning, NICE’s assessment of Brineura is potentially going to be subject to legal proceedings.

Let me move on to individual funding requests. Where a treatment is not routinely available on the NHS, including where NICE has not yet made a recommendation on its use, NHS clinicians are able to apply for funding through an individual funding request. This can be done when a clinician believes that their patient is clearly different from other patients with the same condition, or where their patient might benefit from the treatment in a different way from other patients.

In the absence of NICE’s final recommendations on Brineura, I am aware that NHS England and NHS Improvement have recently considered an individual funding request for my hon. Friend’s constituent Max that it has unfortunately been unable to support, because he would not be regarded as an exceptional case to existing policy. I understand how devastating that decision will be for Max, his parents and all those involved. However, if my hon. Friend’s constituents and their clinicians think that the process has not been followed correctly, they can ask for a review of the decision within 28 days. If a patient’s situation changes or more clinical evidence becomes available about the effectiveness of a treatment, they may also submit additional information to be considered and discussed.

[Catherine McKinnell]

Does the Minister understand how deeply hurtful the situation is to those families who are receiving this treatment on compassionate grounds from the drug company and how difficult it must be for them to listen to this debate? Not only are the Government seeking to hide behind sub judice rules when in fact they should be giving the answers that those families deserve; they are also sending families round and round, suggesting that they make applications based on individual circumstances and that they appeal decisions, when they just want to care for their very sick children. Is there nothing more that the Minister can offer those families who are listening to this debate?

[Caroline Dinenage]

I completely understand what the hon. Lady says, and I completely agree with her. I would love to be able to solve this problem straightaway and give these children the lifeline they need. Unfortunately, that is not the case today. I have committed to make a statement before the House finishes for recess at the end of next week, so I will come back shortly with all the information I am allowed to give. I really do not want her to think that this in any way suggests that I do not understand how the families must be feeling. I can only begin to imagine how desperate it must be to have such a poorly child.

[Mr Jim Cunningham]

I do not want to be difficult for the Minister, because she is doing a very difficult job, but could she clarify something? I got the impression from something she said a minute or two back that if NICE and NHS England concluded negotiations and agreed a price with the drug manufacturer, that would be acceptable to the Government.

[Caroline Dinenage]

My understanding is that if the manufacturer of this vital drug gets around the table with NICE and suggests a price within a reasonable scale, NICE would be very open to listening. That is my understanding. Certainly, I understand calls from Members across the House for NHS England, NICE and the manufacturer to get around the table to try to find a solution. That seems to me to be the most sensible way forward.

[Andrew Griffiths]

I thank the Minister for giving way again. The language she is using is the same as that we hear in a lot of these debates. She has said that many of these families and young children are receiving the drug on compassionate grounds from the drug company. For a parent whose child is not getting that drug to be told that somebody else’s son or daughter is getting compassion but theirs is not—the Minister is a mother herself, so she will understand this—is like a dagger through the heart. Will she do all she can to ensure that that compassion is extended to all those mums and dads who are looking on tonight?

[Caroline Dinenage]

Of course I will commit to doing everything I can to making sure that all the very valid and easy-to-understand sentiments that have been expressed by Members across the House are sent to all the parties involved in this discussion. I completely share Members’ desire to find a resolution to this and ensure that families get the answers they need. In the meantime, I thank all Members for the part they have played in today’s debate, the questions they have asked and the great interest they have shown in this issue. As I say, I will come back to the House shortly with fuller answers to some of those questions.

[Mr Speaker]

Ordinarily, the proceedings would now conclude, and they will do so shortly. However, I think it important that our proceedings should be intelligible not only to right hon. and hon. Members but others who are interested in our proceedings but are not Members of this House. To try to achieve that objective, I want to add, by way of conclusion, the following.

I am advised by my officials that the Department of Health and Social Care claims that this matter—the subject of the debate—is sub judice because an application for a judicial review has been made. In the light of that, let me explain. Under the sub judice resolution of this House,

“Civil proceedings are active when arrangements for the hearing, such as setting down a case for trial, have been made”.

The Department has not supplied evidence that this test is met. Therefore, I stand by what I said earlier on advice.

By way of conclusion, I say to the Minister—echoing, I think, the sentiments of colleagues—that her commitment made in the circumstances, at very short notice, to return to the House before the summer recess to make an oral statement is appreciated, and we look forward to that statement taking place either tomorrow or on Thursday. Policy is a matter for the Government and not the Chair, but the hon. Member for North East Somerset and other colleagues who are similarly interested may rest assured that, for so long as this matter is not resolved to their satisfaction and they wish to bring it to the House for questioning, interrogation and debate again, as far as the occupant of the Chair is concerned, there will be multiple opportunities for them to do so. The matter will not go away.

I thank the Minister once again for her courtesy and consideration in difficult circumstances, and I thank all Members who have contributed to the debate not on their own accounts but in the interests of their constituents, very anxious parents and families, and sympathetic people right across the country.

Question put and agreed to.

Children’s Palliative Care

Caroline Dinenage Excerpts

Monday 1st July 2019 Commons Chamber

[The Minister for Care (Caroline Dinenage)]

I congratulate my hon. Friend the Member for Sleaford and North Hykeham (Dr Johnson) on securing a debate on this important matter. I particularly thank her for the fantastic work she does both as a medical professional—a paediatrician—and in her role as co-chair of the all-party parliamentary group for children who need palliative care, on which she has been a tenacious, passionate and very effective campaigner.

The APPG produced a report last year on children’s palliative care, to which the Government responded in full, and today we have an opportunity to pay tribute to the incredible work offered by children’s palliative care providers, many of which are hospices, in supporting some of our most poorly children and their families.

Children’s Hospice Week took place last month, and this year’s theme was “moments that matter.” As MPs, we are all very aware of the crucial role played by hospices in supporting and caring for our communities at a time of great need. I first became aware of that many years ago, when my mum was involved in fundraising to build the Naomi House children’s hospice near Winchester. In fact, she embroiled my whole family in a series of embarrassing fundraising activities to further her ends.

Since then, I have been privileged to visit Naomi House and, later, Jacksplace, a facility for young adults collocated on the site, to see for myself the incredible care and support they offer to very poorly children and their parents, both on site and more broadly in the community.

In my role as Minister for Care, I see how crucial palliative and end of life care services are for families in need. We know that many areas across the country are delivering excellent support and palliative care for children, but there is no room for any kind of geographical inconsistency, which is why it is crucial that more is done to challenge and support areas that are not providing it. That is why we have made children’s palliative and end of life care a priority in the NHS long-term plan, particularly in supporting children’s hospices.

NHS England’s hospices programme currently provides £12 million a year for children’s hospices, helping to provide care and support to children with life-limiting conditions and their families. I am delighted to announce, and my hon. Friend and other members of the all-party parliamentary group will be very pleased to hear, that NHS England has committed to increase the funding to £25 million by 2023-24. That will guarantee the additional £13 million for the children’s hospice grant. Clinical commissioning groups had been asked to provide match funding, but NHS England has now taken the decision to guarantee the investment after concerns were raised. As my hon. Friend said, match funding would not necessarily achieve the full investment anticipated.

I care very deeply for the hospice movement, and I hope this funding will provide it with full reassurance of the Government’s commitment to and support for its incredible work.

[Dr Caroline Johnson]

I thank the Minister for this fantastic announcement, and I know the money will make a phenomenal difference to the lives of the poorliest children in this country.

[Caroline Dinenage]

I thank my hon. Friend for that. She must take some of the credit, because it is her work, along with that of her co-chair of the all-party group, that has helped to secure these strong commitments from NHS England, so I wish to pay tribute to them this evening. But there is more. We know that children’s hospices are not evenly spaced throughout the country, so NHS England has also committed to undertake a needs assessment to understand whether additional investment, nationally or from clinical commissioning groups, is required where palliative care is provided by means other than hospices.

[Catherine McKinnell]

I, too, thank the Minister for this announcement, which is very welcome, but I cannot pass up this opportunity to intervene, when NHS England is in the mode of looking to fund these services. The hon. Member for Sleaford and North Hykeham (Dr Johnson) gave as an example of children with life-limiting conditions those with Batten disease. A family in my constituency have two daughters with Batten disease. It has progressed in one, but the other is receiving totally innovative enzyme treatment that has stemmed any development of the disease. Yet at the moment NHS England is unwilling to fund this treatment for 13 children in England. So I just want to put on record that this is about not only supporting children with life-limiting conditions, but giving them access to the treatment that will prevent them from going down that road if we can.

[Caroline Dinenage]

The hon. Lady has powerfully put her sentiments on the record, and I absolutely with them. In parallel with the announcements that NHS England has made on the much-welcomed investment, it is working to develop commissioning models specifically for children and young people with palliative care needs, to support CCGs. We know it can be difficult for some commissioners to meet the needs of this vulnerable group, and these models will help them overcome the challenge of delivering services for small and geographically spread groups of patients, whose conditions can fluctuate over the course of their lives. Together for Short Lives is involved in this important work, and I also wish to put on record my thanks to it for its continued support.

My hon. Friend mentioned Acorns hospices, which is currently consulting its staff on the closure of one of its children’s hospices at Walsall. I have been made aware that there is a financial aspect to this consultation, but there are other aspects to it, such as a reduction in the number of bed days used by in-patients. As I say, this is a consultation at this stage and I am hoping that the announcement of this money will help to make a difference to its decision.

In “Our Commitment to you for end of life care”, we set out what everyone should expect from their care at the end of life, and the actions being taking to make high quality and personalisation a reality for all in end of life care. The choice commitment is our strategy for end of life care, which, through the NHS mandate, NHS England is responsible for delivering through its national end of life care programme board, with all key system partners and stakeholders, including Together for Short Lives. This presents the best opportunity to continue to deliver the progress we all want to see and make the choice commitment a reality for both adults and children.

Looking to the future, the NHS long-term plan has set out a range of actions to drive improvement in end of life care and deliver the choice commitment. In addition to the £25 million of investment in children’s hospices announced today, the NHS long-term plan has made a number of commitments that will improve palliative and end of life care for children.

[Dr Caroline Johnson]

Along with the all-party group and Together for Short Lives, we have asked the Minister for three things this evening, and we appear to have received two of them—the extra money and the NHS England review. We will keep pushing for the third—respite care and an army of babysitters—but as Meat Loaf said, “Two out of three ain’t bad”.

[Caroline Dinenage]

As I said at the beginning, my hon. Friend is nothing if not utterly tenacious and passionate in her pursuit of this. I will talk about the short breaks now. She is absolutely right on this; I do not think families are necessarily looking for big long holidays, they just need short breaks, but for those need to be reliable and consistent. People need not to be let down at the last minute. That is the message I am getting loud and clear. Local authorities have a legal duty to commission short breaks, as established by the Breaks for Carers of Disabled Children Regulations 2011. Although the NHS role is not statutory and is a matter for NHS commissioners, the NHS may provide the clinical aspects of care to support such services, if appropriate.

According to the 2018 Together for Short Lives report, 84% of CCGs reported that they commissioned short breaks for children who need palliative care. That is an increase on the support in 2017, when it was 77%, but I recognise that we have much further to go. Parents desperately need short moments of respite and to know that their children will be well cared for at such times. The breaks also need to be reliable, and we will continue to work on that.

[Catherine McKinnell]

I just want to make sure of something. The needs of the child who requires care and support in order for there to be that respite are often too great, meaning that local authorities feel it is not within their remit, yet the clinical needs do not necessarily meet the NHS thresholds, so many families just fall through the cracks in the requirements. That often results in really difficult family situations and sometimes in family breakdown, which is not in anyone’s interest at all. If the Minister can do anything to consider this issue holistically, across the local authority and the health service, to try to bring things together and close the gaps, that will change the lives of so many families up and down the country.

[Caroline Dinenage]

The hon. Lady makes an excellent point with her customary insight. I care deeply about this matter, totally understand what she says and very much recognise the point that she is trying to get across. The problem is that local commissioners are best at designing the local services that best meet the needs of their local populations, but occasionally we find that families fall between the gaps between children’s social care and local health commissioning. I would be happy to continue to meet both co-chairs of the all-party group and Together for Short Lives to look at ways in which the Department of Health and Social Care can help to address the gaps so that people do not fall through them.

I thank my hon. Friend the Member for Sleaford and North Hykeham for securing this debate. I hope she has been reassured by the commitments made on ensuring the future of palliative and end of life care services for children.

Question put and agreed to.