Oral Answers to Questions

Antoinette Sandbach Excerpts

Tuesday 15th November 2016 Commons Chamber

[Nicola Blackwood]

As I have made absolutely clear today, I am determined not to allow the House to get lost in a debate about what the plan could or should have been. Our children deserve more from us. We should not politicise this debate; we should get on with delivering the plan that we have before becoming involved in a lengthier conversation about what a long-term obesity programme should be.

[Antoinette Sandbach (Eddisbury) (Con)]

T8. General practices in Winsford are being underfunded by 3.6% in terms of the formula that should apply to them because of the slow rate of change, while nearby Merseyside practices are being overfunded by 5%. That is resulting in a £30 million loss to my local surgeries. Will the Minister commit himself to looking into it and introducing a quicker rate of change, so that local residents can benefit from the funds that they should be receiving?

[David Mowat]

In 2016, the Government implemented a new formula for allocation, which means a better deal for underfunded areas such as Winsford. As my hon. Friend has noted, however, the extra money is being phased in over a few years to prevent distortions. This year her local CCG received an increase of more than 3%, and the funding will continue to catch up as a result of the new mechanism.

Baby Loss

Antoinette Sandbach Excerpts

Thursday 13th October 2016 Commons Chamber

[Antoinette Sandbach (Eddisbury) (Con)]

I beg to move,

That this House has considered baby loss.

It is an honour and privilege to open the debate, and I thank you, Mr Speaker, for giving us the use of your house to launch baby loss awareness week in Parliament yesterday, which is the first time it has been officially recognised. Parliament is helping to break the silence around the death of a child, which is the most devastating loss that can happen to any parent. Last year, when my hon. Friend the Member for Colchester (Will Quince) spoke in the Adjournment debate, neither of us was prepared for the huge response from parents who have suffered similar losses.

In the Prime Minister’s recent speech, she spoke about tackling injustice where she found it. The sheer scale of child loss in the UK is an injustice, and one that is suffered by so many families year in, year out. Child loss is devastating for each family involved. I should like to outline the size of the problem facing parents, speak about what can be done to prevent loss on the scale we currently face in the UK, and finally talk about bereavement care and best practice to support parents through such a terrible time.

The major types of child loss include miscarriage, stillbirth and neonatal death, although the Department of Health needs to look at streptococcus B deaths, ectopic pregnancies and many other specialist areas such as multiple birth pregnancies.

One in four pregnancies will end in miscarriage. This is often a silent killer, one where parents receive very little support. Of the estimated 200,000 mothers and their families who are affected by miscarriage every year, many will suffer in silence and isolation. A woman has to go through three consecutive miscarriages before any investigation will be carried out.

Ms O’Sullivan, speaking of her experiences after four miscarriages, said:

“The lack of recognition for miscarriage often just serves to reinforce the flawed idea that somehow a pregnancy ‘didn’t matter’, which increases the feelings of isolation”.

She went on to say:

“The loneliness and isolation that miscarriage brings, and the way that it can affect other aspects of life—hopes, dreams, decisions about work—are so difficult and yet under-recognised. We need to demystify it and make it okay to talk about.”

One parent I know wrote this to me:

“Before I even knew I was pregnant I developed a butterfly rash across my chest. My GP dismissed it as an ‘allergic rash’. No blood test, nothing. When I miscarried 9 weeks later at 12 weeks, my GP cheerily said, ‘Keep trying. Miscarriage is common at your age.’ I was 37. No blood test. Feeling disheartened and dismissed I went onto a further two early miscarriages without even daring to call the GP and waste his time. At my fourth miscarriage, I started googling. I approached my GP again—could all this be due to my existing thyroid condition? ‘Extremely unlikely’ was the response. Again, no blood test, but a recommendation to quit my stressful job. I obliged. It was only at a routine annual hospital check-up with my thyroid doctor after my fourth miscarriage four years later that I heard, ‘This sounds like Hughes syndrome, let’s do a blood test.’ St Thomas’s hospital confirmed the diagnosis, but sadly not soon enough to save the baby I was carrying—my fifth. Happily, after proper treatment I became pregnant again, finally giving birth to a healthy boy on the eve of my 42nd birthday. After five miscarriages and five years of my life lost to hope and grief and hope again due to my GP’s ignorance, I still feel cheated and, shame on me, a little bitter. I urge you please, give miscarriage the research, resources and respect it deserves.”

This is just one example of why we need action to help us to find the root causes of miscarriage. I am pleased that earlier this year the first miscarriage research centre in the UK dedicated to preventing early miscarriage opened. That centre is working with Warwick, Birmingham and Imperial NHS trusts, as well as Queen Charlotte’s. It is undertaking excellent research. I know that because my sister, who has had seven miscarriages, has benefited from its work. This year, she gave birth to baby Ella. I am thrilled for her.

The clinicians there, Dr Maya and the team, Dr Tom Bourne and others are doing ground-breaking work on the Genesis Project, looking at the issues around early miscarriage. As an example of how dedicated the staff are, the receptionists who had seen women walking in and out of Queen Charlotte’s, organised for the first time, and in their own time on a Saturday, a multiple miscarriage support group. Clinicians and psychologists also attended in their free time. It has benefited a huge number of women. That learning has the potential to really help to support the work the Government would like to achieve in tackling our child loss rates.

In 2014, 3,245 stillbirths were recorded by Embrace UK. That rate is shockingly high for a high-income country. Even more frightening is the fact that the causes of 46% of stillbirths are unknown. This is devastating for families who want answers. It is also unacceptable in this day and age that more is not being done to identify and investigate the cause of death. When combined with neo-natal death rates, over 6,000 patients are suffering child loss every year. Feelings of isolation and loneliness are experienced by parents who suffer other forms of child loss. Data on tackling stillbirth in The Lancet rate the UK 114 out of 164 countries for progress in reducing stillbirth. Justin Farrimond, who engaged in the digital outreach debate organised by the House on Monday, put it this way:

“To the nurse that had a bad day, that didn’t take correct measurements, that failed to notice a lack of growth, that chose not to look at previous records, that decided not to engage with the mother, that was instrumental in the loss of our baby—we don’t want an apology—your actions were unintentional—we don’t want you to lose your job, you need to continue in your post. In future we know you will be more careful, you will be a model nurse, because you will know what can happen if you have just one bad day. When you have lost a baby you don’t want revenge, retribution, or compensation. You only want to be understood, and for it to never happen again”.

That powerful quotation reflects what so many parents have said to me. They want lessons to be learnt. Most of all, they do not want it to happen to anyone else.

In order to achieve that, there needs to be better investigation of full-term stillbirth where no foetal abnormality is present. There needs to be greater willingness by medical staff to discuss the value of post mortems with parents, so that causes can be identified. There needs to be better and thorough investigation. Professor Cameron of the Royal College of Obstetricians and Gynaecologists has stated:

“The quality of local investigations into cases of stillbirth, early neonatal death and severe brain injury occurring as a result of incidents during term labour must improve”.

[Nick Boles (Grantham and Stamford) (Con)]

My hon. Friend is making a wonderful, wonderful speech and I am very glad to be involved in this debate. I am here because of my constituent Rolf Dalhaug, who lost one of his twin sons, Thor, due to some mistakes during birth. He is particularly concerned that we should take on board the messages in the report to which my hon. Friend has referred about the importance of learning and reviews. I want to underline the point she is making and look forward to hearing the Minister say what we are doing to ensure that that happens.

[Antoinette Sandbach]

I am grateful for that intervention because it makes the point entirely.

Professor Cameron went on:

“Stillbirth rates in the UK remain high and our current data indicate that nearly 1,000 babies a year die or are left severely disabled because of potentially avoidable harm in labour. The emotional cost of these events is immeasurable…When the outcome for parents is the devastating loss of a baby, or a baby born with a severe brain injury, there can be little justification for poor quality reviews. Only by ensuring that local investigations are conducted thoroughly with parental and external input, can we identify where systems need to be improved. Once every baby affected has their care reviewed robustly we can begin to understand the causes of these tragedies.”

The parents who engaged in the digital debate on Twitter earlier this week to raise their concerns about baby loss spoke of the need for third trimester scans and greater consistency of care during the pre-birth period, during labour and following the loss of an infant.

I want to move on to neonatal death. Mr Speaker, as you know, I spoke about my experiences with Sam last year. Parents from around the country wrote to me of their experiences, some dating back many years and others from more recently. One father told me about his son George. He wrote:

“On 7th November my wife and I were delighted when baby George came into our lives, but on the 5th January just days after the festivities our lives were rocked, when our beautiful baby boy passed away in his sleep. Nothing could have prepared us for the hopelessness and feeling of loss, each morning waking up wishing that it was just a bad dream. As we watch the seconds turn into hours, days, weeks and even months, things for us felt hopeless, it was only the knowledge that our other children needed us that kept us from drowning in self-pity.”

George’s father went on that, like other parents,

“I found everyone affected share similar experiences, all wanting to do something, all wanting to make a difference. This is probably why I still feel I should do more, and more is never enough. I am now putting my spare time into raising awareness of sudden infant death syndrome and raising money for charities”.

[Kevin Hollinrake (Thirsk and Malton) (Con)]

My hon. Friend is making an emotional and passionate speech. Two of my constituents, Annika and James Dowson, attended a reception yesterday that was kindly provided by Mr Speaker. They suffered the loss of their baby, Gypsy, who was stillborn in Scarborough hospital. Annika stayed on the maternity ward, with expectant mothers, listening in the most tragic of circumstances to babies crying. Following that, she started to raise money, putting her energies to good use. She raised £9,000 towards the funding of the £134,000 bereavement suite at Scarborough hospital. Does my hon. Friend agree that by directing their energies in such ways, parents can really make a difference to other people and gain support from each other in the process?

[Antoinette Sandbach]

I do agree. I had the pleasure of meeting Annika last year, following on from the speech in Parliament. I know that there are many parents like her who want to see some good come out of the loss. It demonstrates the importance of motivating those parents and allowing them to get involved. Very often, the Snowdrop suite at Scarborough hospital acts as a real reminder in memory of Gypsy.

[Heidi Alexander (Lewisham East) (Lab)]

I congratulate the hon. Lady on securing the debate and on speaking in such a powerful and deeply human way. She is talking about parents’ desire to see some good come from their loss. Does she agree that where failings have occurred, part of that critical process should involve NHS trusts communicating with parents on an ongoing basis about the actions and steps being taken to ensure that these tragedies are not repeated?

[Antoinette Sandbach]

I certainly do. The more open trusts can be and the more they can share information, the more we are likely to achieve reductions in baby death rates. We need that learning to happen in order to tackle what went wrong and why. Without openness, we will not have that.

Freedom of information requests that I submitted to every NHS England trust indicated that approximately 25% of maternity hospitals still do not have bereavement suites. I am aware that, because of the huge difference it makes to parents, the Government have done much to ensure that funding is available and that action can be taken to tackle the problem.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on bringing this matter before the House. We well remember the Adjournment debates to which she and the hon. Member for Colchester (Will Quince) contributed. One in four pregnancies end in loss, and every one of us in this House has seen the reality of that. My own mother had three miscarriages, as did my sister and one of my staff members. We want to take the opportunity to stand together with all those who have loved and lost a baby. We want to say to them, “We acknowledge the loss; we grieve with you; we pray for peace for your family.” Does the hon. Lady acknowledge the importance of having someone with faith in the grieving suite and of the Church assisting?

[Antoinette Sandbach]

I know many good examples of that. I shall talk a little later about the Doncaster and Bassetlaw Hospitals NHS Foundation Trust, where a midwife together with the chaplain have developed the most amazing suite of resources to support parents. They have tailor-made the information available specifically for the loss that parents face—whether a miscarriage or a stillbirth—and it was all done in their own time, unpaid and unsupported. There is that level of dedication. For every area where there is bad practice, there are fantastic and dedicated clinicians, midwives and indeed chaplains, providing support to bereaved parents.

Like George’s father, members of the all-party parliamentary group want to make a difference. We welcome the Government’s commitment to a 20% reduction in stillbirth rates by 2020 and a halving by 2030 and the additional resources that have been put into the perinatal mortality tool. We are calling for some additional steps which we believe will help to deliver those targets.

The report that we launched yesterday identifies three key aims. The first is prevention. We need a sustained public health campaign that informs parents of the known risks. We know that parents of twins are three times more likely to suffer loss. Black and ethnic minority groups face much higher rates of stillbirth and loss. Mothers over 40, mothers living in poverty, and teenage mothers all have increased risk of stillbirth or neonatal death.

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC)]

I am most grateful to both the hon. Lady and the hon. Member for Colchester (Will Quince) for securing the debate.

A Dwyfor mother asked me to take the opportunity to express the depth of her feeling. She wrote:

“We don’t just suffer the loss of a baby, we lose a toddler, a child, a teenager, birthdays, Christmas days, mother/father’s days the list is endless as is the grief. The pain of losing a child never leaves you.”

She also wanted me to say that she believes that a third-trimester scan would have made a significant difference in her case.

[Antoinette Sandbach]

I am very grateful to the hon. Lady for raising that point.

We know that information needs to be targeted at high-risk groups: messages about smoking during pregnancy, risks associated with obesity, and, of course, the importance of not sharing a bed with your baby, and of putting the baby back to sleep. The success of the Back to Sleep campaign, supported by the Lullaby Trust, has shown what can be achieved in reducing sudden infant death. We now need similar information campaigns in relation to stillbirth, Count the Kicks and reduced foetal movement. I welcome the additional steps being taken by the Department of Health—along with the major charities—to highlight avoidable risks, but it is vital for such messages to be targeted at the most at-risk groups in order to have the biggest impact.

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

The hon. Lady has done a great service in raising this issue today. I have had letters about it, and I know that many others have as well. What she is saying is very informative to people such as me, who have not had this experience. What struck me particularly was her observation that one individual had had five or six miscarriages before anything actually happened about it. I found that very enlightening, as, I am sure, did many people outside the House.

[Antoinette Sandbach]

I think it is shocking. Miscarriage is one of the silent subjects. Other Members will probably speak about it, or will have had their own experiences.

The second key principle involves commissioning. We know that the knowledge and learning are out there. There are some inspirational NHS trusts, consultants, midwives and chaplains who have established best practice in hospitals. Greater Manchester, Lancashire and South Cumbria Strategic Clinical Networks has developed a stillbirth-specific integrated pathway. Doncaster and Bassetlaw Hospitals NHS Foundation Trust has introduced butterfly signs on maternity room doors to alert staff when parents have lost a baby, and has adapted its literature to ensure that they receive relevant information and advice. Abigail’s Footsteps offers equipment such as cold cots to hospitals.

The work that is being done by many charities and dedicated healthcare professionals needs to be shared within the NHS to address gaps in the service when parents are effectively left to fend for themselves. That means that there needs to be better and more effective training for healthcare professionals. It is really not acceptable that such limited pre-qualification bereavement training—sometimes as little as an hour—is given to midwives, given the current stillbirth rates. There needs to be better pre-qualification training for them and also for sonographers and GPs, given the statistics.

There are a number of inspirational examples of good practice in the country, and this weekend they are being celebrated at the Butterfly Awards ceremony in Worcester. If Members have examples of good practice in their constituencies, they should consider nominating them for next year’s Butterfly Awards, so that we can increase their prominence.

[Alison McGovern (Wirral South) (Lab)]

I thank the hon. Lady very much for initiating the debate. If there is one thing that we can do in the House, it is break taboos, and she, along with other Members, has done that very successfully. Does she think that it is partly because of that taboo that the quality of training is so poor, and does she agree that the more we talk about miscarriage and baby loss, the better it will be?

[Antoinette Sandbach]

I certainly do. Baby loss awareness week has been running for 13 years, but we in this place need to ensure that it affects policy and delivers better outcomes, and that when outcomes do not change, we hold the Secretary of State and the Minister to account. I know that they have recognised the problem, but we will need to see a change in the figures by 2020.

[Chi Onwurah (Newcastle upon Tyne Central) (Lab)]

I want to add my congratulations to the hon. Lady and also to express my intense respect and admiration for her moving and evidence-based opening to this debate. She mentioned the Butterfly Awards. Daddys with Angels, a charity that offers online help for those who have lost a baby, is campaigning for a day—15 October—to recognise baby loss, as well as raising awareness. Does she agree that that could help to make us more aware as well as helping those who have suffered to gain greater respect and understanding?

[Antoinette Sandbach]

October 15 is the international Wave of Light day, on which parents across the world will light candles in memory of their children. I believe that a lighthouse in Scotland will be lit up for the first time in many years in memory of lost children. I agree that if we talk about the issues and really drill down into the causes, we can start to change the figures in the UK. Key to that is raising the issues here in this place.

Our final ask to the Secretary of State for Health and the Minister is for a bereavement care pathway for parents. That needs to involve an integrated support service, including counselling for parents following the death of a child. I am grateful that, as a result of the work of the all-party parliamentary group on baby loss and information obtained through freedom of information requests, the Department of Health has commissioned Sands—the stillbirth and neonatal death charity—to start developing such a pathway. It is clear that it will require clinical commissioning groups, GPs, local NHS trusts and healthcare professionals to recognise the need for these services and to support such a pathway, working together with the third sector.

[Victoria Atkins (Louth and Horncastle) (Con)]

I join other Members in thanking my hon. Friend and my hon. Friend the Member for Colchester (Will Quince) for bringing this issue to the Chamber today. A mother and father living in my constituency had the nightmare of their baby boy passing away unexpectedly at home. The baby boy was rushed to the nearest hospital, which happened to be in a different region. The fact that the death was registered in a different region from the one in which my constituents live has caused them incredible problems, not least in accessing counselling and therapy. Does my hon. Friend agree that geographical and regional boundaries must not prevent grieving parents from getting the help that they need and deserve?

[Antoinette Sandbach]

I most certainly do. That is exactly the kind of bureaucratic barrier that needs to be broken down. My hon. Friend’s example powerfully demonstrates the need to have a proper bereavement care pathway in place in every region. It should not matter where someone lives; everyone who needs such support should be able to access it.

[Mr Jamie Reed (Copeland) (Lab)]

In relation to the integrated bereavement care pathway, does the hon. Lady envisage the same level of service for parents who have suffered bereavement post-hospital discharge as the service that parents would receive following a bereavement in their own home?

[Antoinette Sandbach]

I agree with the hon. Gentleman. It should not matter what kind of loss a person suffers; they should be able to access that bereavement care pathway whether it is inside or outside hospital.

[Mrs Sharon Hodgson (Washington and Sunderland West) (Lab)]

The hon. Lady has been very generous with her time. Before she concludes her remarks, may I, as an officer of the all-party group, commend her and my fellow officers, including the hon. Members for Colchester (Will Quince) and for Banbury (Victoria Prentis), for breaking the taboo, as my hon. Friend the Member for Wirral South (Alison McGovern) has said? I also commend the hon. Member for Eddisbury (Antoinette Sandbach) for her bravery in bringing this important issue forward for debate in the House. My daughter, Lucy, would have been 18 this year. When I became an MP 11 years ago, I intended to raise the issue, but I never had the hon. Lady’s bravery—I just wanted to commend her for that.

--- Later in debate ---

[Antoinette Sandbach]

I am very grateful to the hon. Lady for her words; I know how important this debate is to her. She has done important work in the all-party group in helping to set out these aims and this vision so that other parents can benefit from our experiences. We know that the energy and commitment of a number of brilliant charities could be brought together with NHS trusts to help deliver the care pathway that is so badly needed for parents such as the hon. Lady.

By breaking the silence and the taboo of talking about child death, the APPG, which is composed of parents who have suffered loss, hopes that the debate will lead to better scrutiny of what is happening in maternity units and primary care relative to child loss. We welcome the additional focus from the Government in this area, but there is more to be done if other families are not to suffer the same grief and loss as so many parents in the UK.

[Andrew Bingham (High Peak) (Con)]

Will my hon. Friend give way?

[Antoinette Sandbach]

I am sorry, but I am about to conclude my speech.

The time has come to act and to see real change in the rates of child loss. I thank all the charities and the bereaved parents who have worked with us and whose expertise has helped to inform this debate. I know that other Members will have their own personal contributions to make.

[Several hon. Members rose—]

--- Later in debate ---

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

First, may I apologise? I very much hoped to be here at the beginning of the debate, but we had a three-and-a-half hour meeting of the Home Affairs Committee. Due to very poor chairmanship, it dragged on. I was chairing it at the time, so it is entirely my fault.

I pay tribute to the hard work of my hon. Friends the Members for Eddisbury (Antoinette Sandbach) and for Colchester (Will Quince). I was lucky to have caught many of the emotional speeches in this debate, which has been extraordinarily well informed by personal experience. It has shown the House at its best. It has also shown some quite extraordinary systemic insensitivities within the health system that can only make a tragic outcome even worse for parents experiencing the grief of baby loss. We must do so much better.

This is a big and partly hidden problem. The rates of prenatal, perinatal and post-natal mortality in this country are appalling and shameful. We rank for stillbirths 33 out of 35 developed nations in the world. One in every 200 babies dies as a result of stillbirth in the UK, which is 15 times the rate of mortality for cot deaths, an area on which we have made huge progress. We have heard many statistics so I will not quote many more, but there is a 25% variance between mortality rates in different parts of the country. That is a cause for great concern in itself. We need to be doing better as a nation, but certainly we need to be doing much better for certain parts of the country that do not deserve to be lagging so far behind in the progress that has been made elsewhere. We have heard that that is down to a whole host of reasons, including poor and patchy monitoring during pregnancy and a shortage of specialist midwives in some parts of the country, but at the end of the day 4.9 out of every 1,000 live births are stillborn. That figure must come down, because it has stayed stubbornly high for too many years.

I welcomed the Secretary of State’s pledge in March this year to seek to halve the number of maternal and baby deaths by 2030. If successful, that would save some 1,500 more lives every year. I welcome the progress made in giving out information and advice leaflets to all expectant mothers by week 24, but for reasons I will come on to in a moment, that is too late. We need to do better.

Smoking is a serious cause of baby loss. The self-induced poison of smoking during pregnancy, and in too many cases smoking excessively, has been attributed to 2,200 pre-term births, 5,000 miscarriages and 300 perinatal deaths. There has been progress and I pay tribute to the work done in this area. My hon. Friend the Member for Congleton (Fiona Bruce) mentioned the progress on foetal alcohol spectrum disorder. The all-party group, on which she and I serve as officers, produced a report on this recently. We have visited hospitals with the charity that promotes this subject to give clearer, better and more high-profile advice to women about what is acceptable and potentially harmful about the use of alcohol during pregnancy. Progress has been made, but we need a lot more. I contrast the lack of progress on baby loss with the great progress made on cot deaths. The very high-profile cot death campaign, some decades ago now, had a huge and very quick effect.

The brief we have received from Together for Short Lives mentions the appalling figures for bereavement support, which we have heard about—that 17% of clinical commissioning groups and 68% of local authorities do not commission bereavement support. This is not something that happens just in a medical environment; it happens when people are at home and maybe coming into contact with other council services, yet it does not happen in two thirds of local authorities. There is also the psychological and bereavement support in neonatal services, or rather the lack of it. The figures from Bliss show that 41% of neonatal units said that parents had no access to a trained mental health worker, while 30% of neonatal units said that parents have no access to any psychological support at all and one third of neonatal intensive care units, which look after the smallest and sickest babies, said that their parents had no access to a trained mental health worker.

This is not just about a bit of tea and sympathy from untrained bereavement support; it is about ongoing trauma. We have heard from my hon. Friend the Member for Colchester (Will Quince), for whom this tragedy happened some time ago, that it is still there. It is not something that leaves people, that they grow out of when they leave the hospital or that disappears when they are fortunate to have a healthy baby. It does not. People deal with it in different ways, with different levels of success or not, and those counselling services need to be available.

The figures for perinatal mental illness in this country are appalling. One in six women will suffer from some form of perinatal mental illness. Those are the women who are fortunate enough to give birth to a healthy baby, and we all know about the impact that attachment dysfunction can have on the child and the problems they may have growing up without a proper, good quality attachment with their primary carer. We know, too, from our report by the all-party group on the 1,001 critical days that the cost of not getting that right is £23 billion every year. It is therefore a hugely false economy financially, let alone socially, not to be doing more about this at those early stages.

There are many charities that step in and help on this front, particularly with after-support, and we have heard some good examples. As my right hon. Friend the Member for Broxtowe (Anna Soubry) mentioned earlier, this is not just down to the NHS. A very good charity approached me recently called Aching Arms, which provides free comfort bears to bereaved parents to support their mental health and healing after the loss of a baby during pregnancy, birth or soon after. Significantly, the bears it gives out are gifts from other families who have experienced the loss of a baby, so the parents receiving a bear will know that they are not alone. Each bear has a label attached with information about the charity and signposts to other charities from which bereaved families can seek support that is relevant to them. Thank goodness there are charities doing work like that, but frankly it should not be down to them to be relied on to provide what is some pretty basic, essential health and social welfare care to mums and dads at a point in their lives when they are particularly vulnerable.

What I want to major on—I thought my hon. Friend the Member for Congleton was going to upstage me earlier—is my private Member’s Bill, the Registration of Stillbirths Bill, which I launched in the House on 14 January 2014 with cross-party support. I want to resurrect my Bill and reheat its contents, because it has not come into law—surprise, surprise, for a private Member’s Bill—but it is just as essential now. Indeed, much of the evidence we have heard today shows why this is something we could do, without advances in medical science or huge costs, that could have a huge impact by giving some comfort and closure to the many thousands of our constituents who go through some of the experiences we have heard about today.

The private Member’s Bill I introduced in 2014 would have amended the Births and Death Registration Act 1953 to provide that parents may register the death of a child stillborn before the threshold of 24 weeks’ gestation. Twenty-four weeks is an arbitrary threshold. If someone happens to give birth to a stillborn child after 23 weeks, six days and 23 hours, that child never existed in the eyes of the state and is to all intents and purposes a miscarriage. If that child had clung on for another couple of hours and been stillborn beyond the 24-week threshold, it would be a child in the eyes of the state. That is an extraordinary anomaly in the law which we need to address.

As we have heard, some experience loss through miscarriage, often repeatedly, some give birth but routinely experience the pain of losing a child within days, weeks or months, and some go through all the trials and tribulations and the highs and lows of pregnancy, only to give birth to a stillborn child. The aim of my Bill was to help those parents. We have heard of the problems we still face, but the situation is made worse for parents who have stillborn children before 24 weeks because of the arbitrary nature of that figure. There are no central records of exactly how many babies are born in that way; they do not form part of the perinatal mortality figures; and therefore the position with stillbirths is actually even worse than we appreciate, because of those born before 24 weeks.

I do not wish in any way to downplay the importance and pain of a miscarriage, particularly for new parents struggling to have their first child, but those experiences are different. That was brought home to me most starkly by the story of a constituent of mine, Hayley, who came to see me back in 2013 to campaign for the change in the law that I then took up. Hayley was pregnant. For nearly 20 weeks, she carried the child of her and her partner Frazer. She felt the baby kicking. She went through all the other ups and downs of a first-time pregnancy, but sadly, after around 19 weeks, something went wrong, and Hayley and Frazer’s baby died unborn. It was not a miscarriage, and the following week Hayley had to go through the pain of giving birth to a baby that she knew was no longer alive. She had to take powerful drugs to induce the pregnancy. She experienced contractions. She went into Worthing hospital and had pain relief.

I pay tribute to Worthing hospital, which has the safest maternity department in the whole country. It has been rated as such by the Care Quality Commission and we are immensely proud of it. We are particularly relieved, given that many thousands of my constituents and I marched to save it back in 2008, when the idiot primary care trust thought we did not need a good maternity department at Worthing hospital. Despite having the oldest population in the country, if not the universe, in Worthing, we also have the best start-of-life facilities, and we are greatly thankful for that.

The day after Hayley went into hospital, she gave birth to her baby, Samuel—she gave him a name. She held Samuel in her arms. She and her partner took photographs, had his hand and footprints taken and said their goodbyes. Fortunately, Hayley was given good support by the clinical staff at Worthing hospital, as one would expect, and they had bereavement guidance. She has an understanding employer in West Sussex County Council and was also fortunate to find a sympathetic funeral director. The funeral took place two weeks later.

To all intents and purposes, Hayley, with her partner, went through all the experiences of pregnancy and the pain of childbirth endured by any other mother, but they were coupled in this case with the unimaginable grief of a parent who has lost a child before they could ever get to know him. She did not just go through a stillbirth: she had a still baby; she became a mum. The crucial difference is that Hayley and Frazer’s baby is not recognised in the eyes of the state because he was born before 24 weeks’ gestation. If he had been born after 24 weeks and one day, he would have been recognised and the death properly registered in a register of stillbirths, forming part of the statistics I referred to earlier. More than just adding to the statistics, though, that would have been the acknowledgment of an actual, individual life. To add further insult to injury, Hayley had to hand back her maternity exemption certificate straight after going through that experience.

When I launched that Bill, I got, as we all do, a wave of extraordinary, tragic experiences from mums and dads around the country, including one from a woman who had twins, one of whom was stillborn before 24 weeks. The other survived and was tragically born stillborn after 24 weeks, but in the eyes of the law she only had one baby. How absurd is that? That is why the law needs to be changed.

That stark difference surely cannot be right. It adds insult to the unimaginable pain that the parents have already had to suffer. Until the passing of the Still-Birth (Definition) Act 1992, which amended the Births and Deaths Registration Act 1953, the threshold was 28 weeks, so prior to that even more babies went unrecognised in official records. That change followed a clear consensus in the medical profession on the age at which a baby is considered viable. Since then, in fact, there have been cases of babies born well before 24 weeks who have, incredibly, survived.

It is true that there is an informal procedure for hospitals to issue so-called commemorative certificates for foetuses that are not classified as stillbirths. They provide parents with a certificate that records their pregnancy loss before 24 weeks; and Sands, that excellent charity of which we are all in awe, has produced a template for a certificate of births which it encourages all hospitals to adopt. However, it is unofficial and still counts for nothing in the eyes of the state. Since that Bill, there has been a happy ending, because Hayley and Frazer had a bonnie baby daughter called Bonnie, who I am delighted to say is well and healthy.

My Bill would provide for the official recognition and registration of stillborn babies of below 24 weeks’ gestation. It would be based not on a crude time threshold of what is deemed a viable foetus, but on the experience of giving birth. Hayley and Frazer’s baby would be recognised as having existed, and Samuel’s death would have been registered, which would go some way to providing some comfort to parents such as Hayley and Frazer at an unimaginably painful time.

[Antoinette Sandbach]

The issues around registration and the line between miscarriage and stillbirth were very much brought up by parents in the online digital debate that we had on Monday. The difficulty of parents having to go to a registry office to register a birth and death of a baby also came up, as it is hugely distressing when parents have to explain what happened to a registrar. The Liverpool Women’s hospital has the ability to carry out those registrations in the hospital; the Minister might want to look at that good practice. I very much support what my hon. Friend is saying.

[Tim Loughton]

I thank my hon. Friend for that. The solutions are, frankly, not rocket science; a bit more sensitivity and common sense would go a long way towards alleviating an awful lot of pain and trauma.

The suggestions in my Bill, or a variation on my Bill, would go some way to providing some comfort to parents such as Hayley and Frazer at this difficult time. It would also provide more data to aid the analysis of why stillbirths happen and hopefully suggest what can be done to jumpstart a resumption of falling numbers from last decade’s plateau. For those who say that the physical act of registering such a child alongside those registering a healthy birth could open up wounds and exacerbate the parents’ grief—we have just heard that—I am sure that a more discreet and empathetic procedure could easily be devised. We could even do it online, you never know.

The Bill had nothing to do with changing the law on abortion. It did not propose to change the status quo on the entitlement to maternity benefits or bereavement entitlement, although I think official recognition would make it easier to secure appropriate empathy and flexibility from employers. The Government have already rightly made changes to maternity allowance guidance to ensure that mothers whose babies are stillborn after 24 weeks receive the benefits to which they are legally entitled; the process has been made easier.

The wheels turn slowly. I was making some progress with my Bill. I am particularly grateful to the former Minister, my hon. Friend the Member for Central Suffolk and North Ipswich (Dr Poulter), who with his own clinical experience recognised the problems in this area. He worked with me, with various royal colleges and others, and we had a big stillbirth roundtable at Richmond House at the beginning of 2015, involving the Royal College of Obstetricians and Gynaecologists, the Royal College of Midwives, Sands, NHS England, the Miscarriage Association and other relevant bodies. I think we found a way ahead in a hugely complex area that is not easy to solve.

A new law was introduced in New South Wales, Australia, whereby a formal recognition of loss certificate is issued in such circumstances, and it has official status. If we could investigate something like that, perhaps we could get back on track with this problem.

We are talking about something that should not happen and that medical technology and innovation are not required to solve. It is something that should not be subject to the restraints and constraints of funding that might apply within the national health service. We are talking about a bit of common-sense admin, but a really important bit of common-sense admin, for somebody who has had to go through this traumatic experience.

In paying tribute to the extraordinary testimonies we have heard today from people who are far more expert and who have had far more first-hand experience—mercifully—than me, may I gently ask the Minister to put this matter back on the agenda as part of improving the whole issue of baby loss? We could do an awful lot of good for an awful lot of our constituents if we could just get this one simple thing done properly.

--- Later in debate ---

[Antoinette Sandbach]

I want to pay a huge tribute to my colleagues, particularly the hon. Member for Lewisham, Deptford (Vicky Foxcroft). I know that it is incredibly hard when we sit in this place to decide whether we want to put something that is a deeply personal piece of our lives into the public domain. Any parent who is dealing with child loss deals with the same dilemma. Do they talk to their employers? Do they talk to their friends? Do they explain what has happened?

I therefore thank the hon. Lady and all other colleagues: the hon. Member for North Ayrshire and Arran (Patricia Gibson), my hon. Friend the Member for Banbury (Victoria Prentis), the hon. Members for Washington and Sunderland West (Mrs Hodgson) and for Glasgow North (Patrick Grady), and my hon. Friends the Members for Gower (Byron Davies) and for Colchester (Will Quince). We were not aware a year ago where this path would take us. I am grateful for the fact that we are breaking the silence about child loss. We need professionals in the NHS to break the silence about child loss, too. That way, we will get real change.

I certainly will join the wave of light on Saturday. There is a series of awards called the Butterfly awards whereby people can nominate good practice in their local hospitals, or a local blogger or small charity that has made a difference in this field. I urge hon. Members to think about nominating people they know for next year. I will be there, listening to the awards. I will certainly be lighting a wave of light candle, and I know that many others will, too.

[Madam Deputy Speaker (Mrs Eleanor Laing)]

Before I put the Question, I should like to commend everyone who has taken part in this extraordinary debate, many of whom have shown incredible courage in talking about sensitive personal issues. Those who criticise this Chamber and the way it works should pay a bit of attention to how powerful it is when it operates as a unique forum for national debate, and how effective it is when it operates at its best, as it has done this afternoon.

Question put and agreed to.

Resolved,

That this House has considered baby loss.

NHS Sustainability and Transformation Plans

Antoinette Sandbach Excerpts

Wednesday 14th September 2016 Commons Chamber

[Mr Dunne]

Shortly. I must make some progress.

The plans offer the NHS a unique opportunity to think strategically. For the first time, the NHS is planning across multiple organisations—both commissioners and providers—with local authorities to address the whole health needs of an area and the people it serves. Also for the first time, the NHS is producing multi-year plans showing clearly how local services will develop over the next five years to deliver real improvements in patient care and better efficiency to ensure that the NHS continues to be able to cope with rising demand from our ageing population. That is leading some STPs to face up to tough choices about the future of some services. Such choices have often been postponed again and again because they were too hard or relied on individual organisations operating on their own to shoulder the responsibility rather than it being shared across the geography or the whole healthcare economy.

[Antoinette Sandbach (Eddisbury) (Con)]

Does the Minister recognise the concerns in constituencies such as mine that have a border with Wales? The numerous closures of hospitals in Wales by the Labour Welsh Government are placing pressure on NHS trusts in Cheshire and Merseyside.

[Mr Dunne]

My constituency also shares a border with Wales, so I am acutely aware that Welsh patients regrettably have to wait longer and have worse access to treatment than those in England. Many of them look to English hospitals for services that are unfortunately not available in Wales, in part due to a conscious political decision of the Welsh Government to allocate less funding to the health service in Wales.

--- Later in debate ---

[Dr Wollaston]

If we get too caught up in the process of consultation, we will not address the other serious hurdles in the way of STPs achieving their aims, chief among which is the issue of finance. The NHS is now in its seventh year of a historic level of austerity, and the average of a 1.1% annual uplift in funding for the NHS over the past six years represents an extraordinary challenge in the context of increasing demand. It is good that we are living longer, but we are doing so with much more complex conditions, and the treatments available to tackle them are more expensive. We need to be clear that, because of that, and even though the settlement for health has undoubtedly been generous in relation to other Departments, a significant gap is opening up in health, and the situation is even worse in social care.

Figures from the Association of Directors of Adult Social Services show that 400,000 fewer people are in receipt of social care packages in 2015-16 than there were in 2009-10, and not only are fewer people receiving social care packages, but those packages are smaller. Many STPs are about transferring care into the community. We need to make sure not only that the funding is available to provide those social care packages, but that we have the workforce to deliver them. The proposal in the area that I represent is to close two community hospitals that are used by my constituents. As a former rural general practitioner, I know just how important those facilities are to local people. They are special to them not only because of the step-up, step-down care that they provide and to which the hon. Lady has referred, but because these are the places that more people like to be at the end of their lives. They provide personal care and allow people, particularly those in rural areas who are doubly disadvantaged by not being able to travel to larger local centres, the opportunity to be treated closer to home.

[Antoinette Sandbach]

In my constituency, Tarporley cottage hospital has been adopted by the local community and continues to provide that step-up, step-down care without being part of the NHS. I wonder whether my hon. Friend would be interested in meeting some of the hospital trustees. It may provide some hope for the future as an example of how communities can come together and support their local assets.

[Dr Wollaston]

I thank my hon. Friend for that invitation. In fact, I have visited the Community Hospitals Association on many occasions, to hear from community hospitals around the country. I will continue to do so and I commend them for the valuable role that they play.

--- Later in debate ---

[Antoinette Sandbach (Eddisbury) (Con)]

I am delighted to be able to speak in this debate.

Two hospitals serve my constituency, namely the Countess of Chester hospital and Leighton hospital, which is actually in my constituency. There are going to be pressures on Leighton hospital: the clinical commissioning group is indicating that it may cut its funding, despite an increase in funding to the four local CCGs that serve my constituency.

I was surprised by the speech made by the shadow Secretary of State, the hon. Member for Hackney North and Stoke Newington (Ms Abbott), because the big pressures on health in Cheshire are a result of the slash-and-burn tactics adopted by Labour in Wales. It is a case of, “Do as I say, not as I do.” Labour’s actions over the border in Wales have had an impact on health services in Cheshire. It has cut the health budget—it has not even kept pace with inflation—and downgraded a huge number of hospitals. It has closed almost all the community hospitals, and it suggested that some patients would need to drive for more than two hours to access maternity wards. One of those hospitals would have been the Countess of Chester—it would have had to have served a huge rural hinterland—and it is not in Wales, so I take no lessons from the Labour party when it comes to transformation plans. Labour’s actions in Wales mean cuts, the downgrading of services and worse access to care than the current positon in England.

I agree with the hon. Member for Central Ayrshire (Dr Whitford) that the transformation programme provides huge local opportunities, including to form tailor-made plans that will suit local populations, particularly in Cheshire, which has large rural populations. The opportunity to deliver more services in a primary care setting should be welcomed.

On funding for social care, I welcome the fact that changes in the budget mean that additional funding from council tax receipts will go to local authorities to help with their social care budgets. To that extent the involvement of the local authorities, Cheshire West and Chester, and Cheshire East, in the transformation plans, and in particular the integration of social care and health services, provides an opportunity which I hope the STP in Cheshire will seize.

Support for Life-shortening Conditions

Antoinette Sandbach Excerpts

Tuesday 7th June 2016 Westminster Hall

[Antoinette Sandbach (Eddisbury) (Con)]

I am very grateful to my hon. Friend the Member for Pudsey (Stuart Andrew) for securing this debate, which, as Members know, is on an issue that I feel very strongly about. It was heartening to hear about the work of the Hope House hospice that serves my constituents, although it is based over the border in Shropshire, and about the work of Claire House, which is a very effective children’s hospice on the Wirral.

Other hon. Members have spoken powerfully about the transport issues and the transition issues, so I will concentrate on the families and the role that they play. It is particularly important to do so this week because it is Carers Week, and we know the vital role that parents play.

My hon. Friend made an important point about the 2% funding that was mentioned in the Chancellor’s Budget and the fact that that funding is limited to adult social care. There is no justifiable reason for that discrimination. It is clear that local councils have cut their funding for services, particularly for short breaks. The impact of that on families is devastating. Thirty-six per cent. of families with children who have life-limiting conditions experience family breakdown. Therefore, it is vital that the Minister recognises that cuts by local authorities to the funding for those short breaks lead to increased burdens on Government elsewhere and that it is short-sighted not to fund those short breaks, which give the families and the siblings the vital respite that is often needed to ensure that they stay together as a cohesive unit and get the break from some quite onerous caring responsibilities. I do not say that in a negative way. All the parents absolutely love their children and want to give them the best they can in the short lives they have, but they need that break and the time for themselves.

[Stuart Andrew]

I am grateful to my hon. Friend for making that important point and I would like to give an example. I always remember speaking to a father at the hospice who said that if he got up eight times in the night he considered that a good night’s sleep. Does that not highlight just how important it is that the families get the respite that they need?

[Antoinette Sandbach]

It is absolutely critical. I have experienced the situation in which, because of advances in medical science, the doctors cannot say whether someone will fall on one side or the other of the line of likely life expectancy—fewer or more than 25 years—and they do not qualify for support from the voluntary sector. Hospices play such an important role in supporting families and I give credit to the Government for funding children’s hospices, albeit not at the same level as adult hospice care.

There is, however, a cross-border issue, which Claire House neatly exemplifies. The hospice treats a number of Welsh patients—it will not turn children away—but it does not get funded for any of the treatment it gives to them. I urge the Minister to consider having National Institute for Health and Care Excellence clinical guidance that would apply nationally and help to iron out some of the wrinkles, perhaps taking some of the best practice in the devolved nations. We have heard powerful contributions about some of the efforts being made in Northern Ireland. There is some learning that can be gained from across the devolved nations, but guidelines would ensure that hospices were put on a sustainable footing.

On that point, I support the call for joint commissioning and ask the Minister to consider what happens after the death of a child. I am here partly in my capacity as the chair of the all-party group on baby loss, and the subject has been debated elsewhere. There is important counselling support that could be put in place before the loss of a child and, indeed, afterwards. Hope House, for example, has a dedicated counselling centre and I am delighted that recently—in fact, just this week— I got confirmation from the Treasury that the Alder Centre could apply for LIBOR funding. The centre provides vital bereavement support for families in the north-west and I very much hope that it puts in an application before August. That is a beacon of light perhaps in the north-west and in the debate.

[Caroline Ansell (Eastbourne) (Con)]

I wanted to pick up on my hon. Friend’s extremely well-made point about sustainable funding. Chestnut Tree House in east Sussex provides the most extraordinary care for children and young people with life-shortening conditions but, despite the huge merit of its work, it has only 7% Government funding, and it is not confident about securing even that, year on year. The local efforts are magnificent. For example, just last month, 700 women walked the seafront in Eastbourne and raised more than £70,000, but that equates to just 11 days of care at that extraordinary place. The hospice wants to increase its services—it is not looking to retract any. It says that there are many more families it can support.

[Antoinette Sandbach]

That is typical of the hospice movement. St Luke’s hospice, which provides adult care in my constituency, is looking to expand its services, and hospices such as Hope House and Claire House are also happy to do so. I know that the Minister has a new per-patient funding currency for children’s palliative care, which will come in next April, but in the meantime hospices need certainty of funding so that they can commission services. I urge the Minister to impose some requirements on clinical commissioning groups, to ensure that there is not that cliff edge that has been spoken about today and that we have joined-up provision from, literally, the cradle to the grave, with support afterwards for families who need it.

Junior Doctors Contracts

Antoinette Sandbach Excerpts

Monday 25th April 2016 Commons Chamber

[Mr Hunt]

As I have said many times, were we to do that we would be giving the BMA a veto over a manifesto commitment, and no union should have a veto over what an elected Government do. I hope that what I said in my statement will give comfort to the hon. Lady and some of her constituents that we are increasing staffing levels in the NHS to deal with the extra pressures. With regard to unworkable rotas, perhaps she will go and tell the BMA to sit round the table and talk to its local trust managements so that we can get those rotas to work, because the way to sort out these problems is to sit down and discuss them.

[Antoinette Sandbach (Eddisbury) (Con)]

Will the Secretary of State join me in thanking the consultants and nurses at Leighton hospital and Countess of Chester hospital who will be working extra hours in order to give as much patient cover as they can? Does not the recent leak of emails from members of the junior doctors committee last week show that they utterly reject any compromise and that any offer at this stage is simply not a serious offer?

[Mr Hunt]

I thank my hon. Friend for what she says about consultants in her local trust and, indeed, up and down the country, as well as nurses, paramedics and many other people who will be working to keep the public safe. I salute all of them. She is absolutely right: those leaked emails show that those on the junior doctors committee know that had they been prepared to negotiate on Saturday pay we would not have had an imposed contract, so it was completely in their hands to avoid this outcome. They chose not to do that; they wanted war. That was a totally irresponsible thing to do. They need to recognise that the way we will build a safer NHS is by sitting round and talking to a Government who want to create it.

Junior Doctors Contracts

Antoinette Sandbach Excerpts

Thursday 11th February 2016 Commons Chamber

[Mr Hunt]

When those colleges have had a chance to look carefully at our proposal, they will find much that they can commend. For both psychiatrists and GPs, we are putting in a premium to attract more people into those specialties, which will be immensely important both for them and for the NHS.

[Antoinette Sandbach (Eddisbury) (Con)]

Will the Secretary of State draw to the shadow Secretary of State’s attention the research in the Netherlands that has shown that seven-day working has dramatically cut stillbirth rates—by 6.8% in the Netherlands—and has the potential to have a real impact on survival rates for young babies?

[Mr Hunt]

I commend my hon. Friend for her campaigning on that issue. She could not be more right. Just before Christmas, a report by Professor Paul Aylin said that the mortality rates for neonatal children were 7% higher at weekends, which underlines just how important it is to get this right.

NHS (Charitable Trusts Etc.) Bill

Antoinette Sandbach Excerpts

Friday 6th November 2015 Commons Chamber

[Wendy Morton]

That is a very good question. Quite simply, the charity would not be able to complete the move to independence, so the hospital would have to run two charities: one would be the independent arm; the other would be the existing one into which the royalties from “Peter Pan” would be transferred. That would mean a duplication of work, and more bureaucracy. When the charity goes out to raise funds, it needs to provide certainty to the public.

[Antoinette Sandbach (Eddisbury) (Con)]

Earlier, my hon. Friend mentioned the Alder Hey Children’s Charity, which is the key leading charity in the north-west and provides the same sort of support to children. Does she agree that families feel a great sense of ownership over their local hospital, which gives them such support, and therefore they might be much more willing to fund-raise for an independent charity that was seen as physically separate from the board of the hospital or the NHS trust?

[Wendy Morton]

When it comes to hospitals, we all have our own personal stories on which to draw and our own personal experiences. The British public are very generous in donating to many different causes, and certainly to local hospitals. The move to independence will help to attract some of the bigger corporate donations, and enable the hospital to work and compete alongside other charities. It makes them operate more independently and less bureaucratically in today’s world, which is very different from that which existed when the trusts were first formed.

On my visit to Great Ormond Street, it was clear to me that the legacy of J.M. Barrie lives on. Where else in the world could we find a boardroom named after a fairy, Tinker Bell? No one can fail to be touched by the commitment and dedication of the staff there. Great Ormond Street hospital has been constantly evolving since opening in a Georgian townhouse in 1852. Today, it is halfway through an ambitious, 20-year redevelopment programme to rebuild two thirds of the hospital site. The charity is working to deliver new facilities appropriate to world-class paediatric care, research and education. It is the largest dedicated funder of paediatric research in the UK, and that is something of which we should all be proud.

--- Later in debate ---

[Kevin Foster]

My hon. Friend is absolutely right. In my constituency, for example, we have many people over the age of 60 who have retired from professional careers. They reach the point in life where they wish to retire from full-time work, but they still have skills and abilities that they want to offer, and might be thinking about a social rather than a financial reward. Having more flexibility in the charities’ structures means that they can bring in more of those people. People who might be slightly reticent about being appointed by the Secretary of State, perhaps because of their previous job, might be delighted to be involved in an independent charity that is committed solely to its objects.

[Antoinette Sandbach]

The risk attached to the appointment by the Secretary of State is the perception that it might be a political appointment when it is actually an independent appointment. That is what the Bill removes.

[Kevin Foster]

I could not have put it better myself. My hon. Friend is right that although the Secretary of State might appoint someone independent with skills and abilities such that they become a trustee by another route, the fact that they are appointed by the Secretary of State makes it appear that they are the Government’s person, even if they are diametrically politically opposed to the Government of the day. I am sure that the Minister will be able to think of examples of Government appointments who are not the most supportive of the current Administration.

--- Later in debate ---

[Mr Rees-Mogg]

Madam Deputy Speaker is giving me one of her looks. As much as I would like to discuss reform of the House of Lords, I would be ruled out of order. If my hon. Friend will forgive me, I must get back to jobbery, because jobbery and avoiding jobbery are at the heart of the Bill.

I was explaining how jobbery, when it starts, is not a deliberate corruption. It is merely the recognition that it just would not do to appoint somebody on the other extreme of politics. We can hear Sir Humphrey going to the Secretary of State and saying, “It would be a little brave, Minister, to appoint such a person who is on so different a wing from you.” The next time an appointment comes up, there is the thought, “Well, if I couldn’t appoint someone who was actively opposed, perhaps I should really only appoint people who are on my side”—in other words, our mates and friends. Thus we get to the heart of jobbery. Appointments are made purely because of somebody’s political colour and context.

In the primary care trust in Bath and North East Somerset which preceded the current organisations a local Conservative had a judicial review against the previous Labour Government to get himself appointed as its chairman, because he was the most qualified person and had been refused only on the basis that he was a Conservative. Therefore, the idea that jobbery has completely left the system is false, and so too is the idea that Governments are so high and mighty and Olympian in their decision making that they do not descend to mere political jobbery.

[Antoinette Sandbach]

My hon. Friend might like to know that examples of jobbery abound in Wales. It might be useful to look at some of the appointments made by the Welsh Government to the various public bodies.

[Madam Deputy Speaker (Mrs Eleanor Laing)]

Order. I must remind the hon. Lady for the sake of good form—I appreciate that she has not been in the House for very long so I am not reprimanding her—that she must address her remarks not to the hon. Gentleman, but to the Chair.

--- Later in debate ---

[Antoinette Sandbach (Eddisbury) (Con)]

I am grateful for the opportunity to take part in the debate. I am pleased to follow my hon. Friend the Member for North East Somerset (Mr Rees-Mogg), who spoke with characteristic authority, certainly educating the newer Members, among whom I count myself.

I support the Bill introduced by my hon. Friend the Member for Aldridge-Brownhills (Wendy Morton). She cited the hospital that serves my constituency in Eddisbury, the Alder Hey hospital, as an example of successful independence from the NHS trust. To show how valuable that is, the hospital moved in October to new premises and became Alder Hey in the Park, a brand new £237 million hospital with 270 beds and 16 brand new operating theatres equipped with state-of-the-art technology. It treats 275,000 children across the north-west and north Wales, and is as important a centre for children’s health, medicine and research as Great Ormond Street in London.

The charitable part of Alder Hey became independent in the way proposed by the Bill in April. The charity has contributed £20 million for equipment in Alder Hey hospital, and because it is independent it is separate from the hospital board. In my previous role, I had experience of cases in which the hospital board and the NHS charity were integrated, and in which the charity did not have the independent thinking that is clearly demonstrated by the Alder Hey charity and the other six charities referred to by my hon. Friend in her eloquent explanation of the Bill. It is clearly a vital step for those bigger charities to achieve perceived independence.

[Kevin Foster]

It will be not just independence but the flexibility to bring in different skills and talents that will benefit the charity, its objectives and, ultimately, patients.

[Antoinette Sandbach]

I entirely agree with my hon. Friend. One important step being taken by Alder Hey is in ground-breaking research, and the charity allows it to get funding that will help in those aims.

The new facilities at Alder Hey are extraordinary, designed in part by former child patients. A group of children aged 10 to 22 who had stayed in the hospital contributed towards the design of the new Alder Hey in the Park. I invite Members from across the House to consider visiting the hospital to see the invaluable work that it does. As my hon. Friend the Member for Aldridge-Brownhills said, funding from NHS charities contributes to innovation and research.

[Kit Malthouse]

Perhaps I should declare an interest. I was born in Alder Hey hospital and had a myringotomy there when I was eight—a surgical procedure where the eardrum is taken out to drain excess fluid. Grommets are now used instead.

On independence, one thing that is critical to the success of charities is the tax relief that they attract, which is a serious incentive for donors. Does my hon. Friend agree that if a charity has its trustees appointed by the Secretary of State and is working closely with, in effect, an organ of the state, an NHS hospital, there might be some question about whether that charity should be entitled to tax relief, given that it is effectively part of the state, and that the move to greater independence is likely to make any challenge to that status recede?

[Antoinette Sandbach]

Indeed. My hon. Friend the Member for North East Somerset made a similar point. It is important that that independence is seen, is effective and is understood in the public domain. Sadly, there are some examples of NHS charities that are deeply influenced by their boards and are not seen to be independent in the way that my hon. Friends described.

Some £2 billion worth of assets are under the control of NHS charities and there is a combined annual income of about £30 million. These are significant sums which, as has been pointed out, are intended for the benefit of patients, and should not go into administration and the endless accounts and tick box exercises that are required if two parallel charities are run side by side. The Charities Commission has great expertise in the oversight of charities and in ensuring that charities’ income goes to the appropriate causes for which they were set up.

My hon. Friend the Member for Aldridge-Brownhills made an important point about the unlimited liability of charitable trustees, which is a very big personal risk. If anything goes wrong, such as some awful fraud, charitable trustees with unlimited liability have personal liability and could lose their homes and everything they own. As a result, some people are unwilling to become trustees of such charities. My hon. Friend’s Bill allows some protection, if trusts choose to have it, giving trustees limited liability. That is likely to broaden the range of people prepared to take on these roles.

It has been noted that this is trustees week, and a constituent of mine, Jeannie France-Hayhurst, is a trustee of the Alder Hey charity who provides a great deal of service. I know that she would encourage and would want others to encourage people from a wide range of backgrounds and a broad range of experience to get involved in their local charities.

In my constituency, Eddisbury, we have two good examples of local charities. One is the Tarporley War Memorial hospital, which was set up many years ago. It is independent of the NHS and is entirely funded by the community through charitable fundraising and charitable giving. That is exactly the type of activity that my hon. Friend the Member for North East Somerset was talking about, allowing communities to come together and work to deliver services in their area. The hospital specialises in the rehabilitation of the elderly, intermediate care and palliative care. It has 17 beds and is extremely well supported in my constituency. There is a wonderful double-decker bus that drives around with vintage clothing for sale. The bus parks in towns and villages in my constituency on a set day every week—in effect, a mobile shop to which members of the public can come. It is a wonderful sight and is entirely staffed by volunteers, like much of the other fundraising that goes on to support Tarporley War Memorial hospital. It is a great example of an independent charity that can support the delivery of NHS functions.

The hospital is used by local GPs to provide clinics closer to those who need their services. Staff from the local hospitals, such as the Leighton hospital and the Countess of Chester hospital, can travel to Tarporley War Memorial hospital and provide outreach services such as maternity services, dressings clinics and minor injuries treatment. It is a great example of how an independent charity can stand on its own two feet and provide great support and services to the local community.

The other charity in my constituency which exemplifies that is St Luke’s hospice, which is based in Winsford. It describes itself as a small hospice with a big heart, and I can vouch for that. It, too, is looking at ways of extending the palliative care that it provides and broadening the services that it delivers in the local community. It has fantastic outreach services which support those who are frail, those with failing health, those who are ageing, dying or grieving, and those who have dementia. It has broadened its remit from palliative care and is looking at how it can deliver services closer to constituents’ homes. I commend the hospice for its work. I know that my hon. Friend the Member for Weaver Vale (Graham Evans), who is not here today, has fundraised extensively to support St Luke’s hospice, as have many other neighbouring Members of Parliament who know the invaluable service that it delivers locally.

[Craig Williams (Cardiff North) (Con)]

My constituency has a number of hospices and charities—Velindre cancer centre and George Thomas hospice—to which I could apply my hon. Friend’s comments about those in her constituency. I know that she has experience in the Welsh political environment, as do I. Does she agree that it is refreshing to see, I hope, this Government and this Parliament giving away power over the appointment of trustees?

[Antoinette Sandbach]

I am grateful to my hon. Friend for raising that matter. He will be aware of the extensive issues at the Betsi Cadwaladr University Health Board, where at times there have been appointments that could be characterised as highly political. Indeed, an individual described as “the axeman” was recently appointed. Given the threat to maternity services at the hospital—my hon. Friend the Member for Vale of Clwyd (Dr Davies) and I have campaigned for them to be retained—I am well aware of those concerns.

[Albert Owen]

The hon. Lady is right to point to Alder Hey’s excellent record. It covers north Wales and my constituency, so I have been there on many occasions. There are trustees from Wales on English hospital boards, and the difficulty with recent legislation is that we do not know whether their role will continue. Welsh trustees on English boards and their Members of Parliament will have difficulty in future. Is she as concerned as I am about that, and does she agree that we need further clarification?

--- Later in debate ---

[Antoinette Sandbach]

I am grateful to the hon. Gentleman for raising that point, because one issue with the service reorganisation in north Wales is that the new SuRNICC centre—the sub-regional neonatal intensive care centre—has not yet been built. It was due to be completed by next March, but the first sod has not even been dug out of the ground. Instead, because of the threat to maternity services in north Wales, very sick babies are having to travel over the border to Leighton hospital in Cheshire in order to access the services they need.

The wonderful thing about an independent charity is that, when it comes to appointing trustees, there are no limitations based on where they live or anything of that nature. Trustees should be independent, free-thinking, able to provide good advice and genuinely committed to the charity for which they act, as they have heavy legal responsibilities. I certainly do not imagine that there would be any discrimination on the basis of nationality.

[Albert Owen]

The point I was making is that under English votes for English laws, Welsh Members of Parliament with constituents who are trustees on English boards will not be allowed to vote on legislation affecting them. It might be a technical point, but it is hugely important to my constituents.

[Antoinette Sandbach]

I am so grateful to the hon. Gentleman for making that point, because health services that my constituents access are affected by decisions taken in Wales. The threat to maternity services in north Wales will have a direct impact on the resources of the county of Cheshire and Leighton hospital, yet they have no say in those decisions—even the hon. Gentleman has no say—because they are taken in Cardiff.

[Kevin Foster]

It is very tempting to go down that path and discuss various issues relating to devolution, but I am conscious, Madam Deputy Speaker, that to do so would not be in order. Does my hon. Friend agree that the benefit of the Bill is that it would make the charities independent so that they can select who is best to be on their board of trustees from the whole area, regardless of politics or boundaries?

[Antoinette Sandbach]

That is precisely why I support the Bill, and it is no doubt why my hon. Friend the Member for Aldridge-Brownhills has attracted support from so many Members today. The crucial matter is independence. Unfortunately, in my previous role I had experiences that went the other way when independence was lacking, and that had a negative impact on outcomes for my constituents.

[Mr Howarth]

Will the hon. Lady give way?

[Antoinette Sandbach]

I am afraid not, because I must make some progress.

Alder Hey hospital has been leading the way with regard to what is now happening at Great Ormond Street hospital. I completely support the aims of the Bill relating to the intellectual property rights for “Peter Pan”. That situation is almost unique. The advantage of the Bill, as hon. Members have pointed out, is that successful authors who might wish to allow their rights to go to a local children’s hospital, or indeed other health services, could have confidence that they would be leaving them to an independent charity without any perception of political appointment or interference. I hope that will encourage other authors to consider supporting the great research and work done at Great Ormond Street hospital and Alder Hey hospital when making bequests.

Peter Pan said it best:

“All you need is faith, trust and a little bit of pixie dust.”

I suspect that in this case we need faith, trust and a little bit of Wendy dust. If we can humbly sprinkle a little of our Wendy dust, we can use this Bill to sort out the legislative mess for the children at Great Ormond Street hospital and, I hope, the other 16 charitable trusts to which my hon. Friend the Member for Aldridge-Brownhills referred.

Off-patent Drugs Bill

Antoinette Sandbach Excerpts

Friday 6th November 2015 Commons Chamber

[Craig Williams (Cardiff North) (Con)]

It is a pleasure to follow my hon. Friend the Member for North Dorset (Simon Hoare). I commend the hon. Member for Torfaen (Nick Thomas-Symonds) for introducing the Bill and for paying tribute to my predecessor, Jonathan Evans, who tried to introduce a similar Bill in the previous Parliament. I shall be brief, but there are a couple of things I should like to add to the debate. I feel strongly about this Bill, and I am here debating it even though it means missing a meeting with my constituents. I am not sure how I can get an apology to them for that, but hopefully that explanation helps.

A number of charities back the Bill, which has cross-party support. I have served as the vice-chair of the all-party parliamentary group on these issues, and I want to pay tribute to Breast Cancer Now, which has given us terrific support. It pioneered the way and has guided us through the Bill. The hon. Member for Torfaen knows that better than I do.

I want to dwell on the licence gap and the points that have emerged about GPs and off-label prescriptions. Some clinicians and GPs, as well as the wider group of people who can prescribe, have confidence and belief in the drugs. I think it is more an issue of confidence than one of off-label. The big issue for me and my predecessor, Jonathan, is the postcode lottery. Some GPs know that there is access and which off-patent and off-label drugs they can heartily recommend to their patients, and they willingly prescribe them. However, there are some clinicians who will not do so.

[Antoinette Sandbach (Eddisbury) (Con)]

The chair of the breast cancer clinical reference group, Professor Ian Smith, joined 39 other eminent clinicians in pledging public support for the Bill last week. Does my hon. Friend agree that there is an identifiable problem, which is likely to arise, with the insurance liability for prescribers?

[Craig Williams]

My hon. Friend makes an excellent point, and adds to the body of evidence. That issue could be looked at further in Committee.

In closing, I want to add one point. This Government and the coalition Government set up the cancer drugs fund, on which I commend them. I only wish it was available in Wales. The Bill would enable that fund to be used to apply for cheaper drugs, which would mean that the money went a lot further. Although I will continue my campaign to get our dear friends the Welsh Labour Government to initiate a cancer drugs fund, I commend the Bill to the Minister as it would help to deliver that fund, and to do so far more cheaply and effectively.

I have teased out the off-patent, off-label issue as I wanted to do, and I hope the Minister takes that and my colleagues’ points on board to pull this sector and the charities together, regardless of what happens to the Bill. However, I commend the Bill, I thank the hon. Member for Torfaen for leading on it and I once again commend the work of my predecessor, Jonathan.

--- Later in debate ---

[Alistair Burt]

The guidance says that in treating their patients, clinicians must first consider using a licensed medicine within its licensed indication. If that will not meet their patient’s needs, they can consider a licensed medicine outside its licensed indication, and only if that is not suitable should they consider using a medicine that is not licensed at all. We know that a great many medicines can offer benefits to patients when prescribed outside their licensed indications.

[Antoinette Sandbach]

Will the Minister give way?

[Alistair Burt]

Not at the moment, because this point is absolutely crucial to put on the record.

Prescribing in that way is part and parcel of normal, everyday clinical practice, as the hon. Member for Central Ayrshire confirmed. It is very common in prescribing for children and in treating some forms of pain. Most doctors, particularly GPs, will do it every day in their clinical practice. That has already been covered in relation to tamoxifen and raloxifene for the prevention of familial breast cancer. As was rightly identified by the hon. Member for Torfaen, the issue is compounded when drugs come off patent and new evidence suggests that they would be appropriate in the treatment of new indications.

The hon. Gentleman has gathered a lot of support for the Bill, but it does give the impression that such drugs are not being made available to patients. It also suggests that licensing is required to make these drugs available for patients, and that a NICE technology appraisal is required as well.

--- Later in debate ---

[Alistair Burt]

The reason I said earlier that I would go on until 2.30 and beyond is that I have not even begun to deal with the licensing arguments and the problems—[Interruption.] Hon. Members just said that I had run out of arguments, but I have not even covered the difficulty of the Secretary of State being put in the position of being the regulator and someone who applies for licences. There are plenty more arguments that need to be put and I think that we will run out of time.

[Antoinette Sandbach]

Given the Minister’s clear support for the principles behind the Bill, will he agree to meet the various organisations to see whether there is a non-legislative means of achieving the aims of the Bill?

[Alistair Burt]

I am certain that the Under-Secretary of State for Life Sciences will meet people soon at my request to carry on our discussion. It is clear that the House is not in any way comfortable with the Government’s position in resisting this Bill, so before the matter is considered again it is essential that the Government look at it further. If a message had gone out from the House that there was only one way for people to get access to the drugs they need, that would be wrong—

Maternity Units: Bereavement Care

Antoinette Sandbach Excerpts

Monday 2nd November 2015 Commons Chamber

[Antoinette Sandbach (Eddisbury) (Con)]

It is a huge honour to follow my hon. Friend the Member for Colchester (Will Quince) who has spoken with such courage about the experience that he and his wife had with the birth of their son. I know that there are many parents who will have had similar experiences, and it is a testament to the support that he received during his son’s birth and death, which he spoke about so movingly, that he has the strength to speak today.

I am grateful to my hon. Friend for asking me to contribute to his debate. Certainly I would not be able to speak in this debate without the support that I received. The night my son died, I woke to find him not breathing. Arriving at hospital, after looking at a flat line in the ambulance for more than 20 minutes, a crash team was waiting for me, but it was too late. The consultant neonatologist was a calm and reassuring presence, and the nursing staff were patient. I readily agreed to a post mortem, as I wanted to know exactly what had happened. Staff at the hospital were wonderful, but I found myself in a plain room with questions being asked of me. I was told that I had to wait for the police. I had left in such a panic that I had left my telephone behind and I could not remember any telephone numbers, and I was there on my own. [Interruption.]

[Mark Menzies (Fylde) (Con)]

I thank my hon. Friend for giving way in what is a very, very powerful and emotional contribution. Does she agree that this Government are making great strides to help support parents who are at a very vulnerable point in their lives? I look forward to seeing her, during our time in this House, helping to move the debate forward.

[Antoinette Sandbach]

I certainly do agree with my hon. Friend, and I am very grateful to him for his intervention. That night, I was given a leaflet by the Chrysalis Trust, on which there were telephone numbers that gave me invaluable information about the help that I could access.

I arrived home later that morning to find police officers going through my house. Clearly, they had to investigate the death as it had been away from the hospital. I had to explain to my six-year-old what had happened. It was then that the advice in the leaflet came into its own, because it was made clear to me that I should not say that my son had gone to sleep. It was at that point that I realised that I would need additional help, as I did not know how to cope with what had happened. I called the number for the Chrysalis charity, and it organised counselling for me, which was a lifeline.

I owe a huge debt of gratitude to John from the Alder Centre at Alder Hey hospital, as there was no counselling available in north Wales, and the counselling that was provided was funded through the Chrysalis charity with the aid of a small grant from the NHS trust. The grant was subsequently withdrawn, forcing the closure of that charity.

The two hospitals that serve my constituency, Leighton hospital and the Countess of Chester, both have specialist rooms for babies who are known to have limited life expectancy following birth, with one-to-one-care offered. The support of those staff is invaluable and Leighton, which has an award-winning maternity department, has a trained bereavement midwife. For parents who suffer loss, however, counselling services can be accessed only via a referral from their GP. The Countess of Chester has the newly equipped Lavender suite, with a cool cot that allows parents to spend time with their baby, but a parent presenting at A&E or through the child unit would not have access to that suite. There is a full-time counsellor at the trust, but the workload means that it can be several weeks before a parent can get support. Both hospitals refer to Sands, which has volunteers rather than trained counsellors.

Bliss outlines that 41% of neonatal units nationally say that parents have no access to a trained mental health worker, with 30% of neonatal units saying that parents have no access to any psychological support at all. The Alder Centre offers 24-hour bereavement support and, as the centre has said to me:

“It is important to slow down the decision making to give parents the space in which to make informed decisions, it is vital to have that talking support with someone who can say to you it is alright, take your time.”

Fifteen babies die a day, and there are five deaths a week due to sudden infant death syndrome. That figure has been the same for the past 20 years.

Charities working in this field, such as Sands, Bliss, Group B Strep Support, the Lullaby Trust and Tommy’s, need data so that they can target their research and consider potential common factors contributing to our high infant mortality rates. I urge the Minister to ensure that the British Association of Perinatal Medicine guidelines are followed and that psychological support is available for parents who suffer a perinatal, stillbirth or sudden infant death. I am aware that the Government have made a commitment to put mental health services on an equal footing to physical health services. This area clearly needs careful consideration and a greater degree of concentration by clinical commissioning groups and NHS trusts. I know that there is a national perinatal epidemiology unit at Oxford and would be grateful if the Minister updated us on that and on what has happened to the NHS England plan to support those with counselling needs, the report on which was due to be submitted in March 2015.

Support for parents is arguably just as important, if not more important, when the dreams and hopes of a new baby’s arrival are shattered. The national standards exist, but it is vital to ensure that they are complied with so that every parent has access to the help and support they need.