Children’s Palliative Care

Debate between Caroline Johnson and Tim Loughton

Monday 1st July 2019 Commons Chamber

[Dr Johnson]

I thank the hon. Gentleman for his intervention. I do indeed share his concern and will come to some of those figures in a moment.

To return to the care that is provided during the palliative care process, finally, the care will indeed be about end of life care and bereavement counselling. Children’s hospices throughout the United Kingdom provide some of this fantastic care. They have specialist medical, nursing and other professional staff and volunteers, and I pay tribute to them, as I know other Members do, for their dedication and the fantastic work they do.

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

My hon. Friend is a great ambassador on this very important subject. I pay tribute to the Chestnut Tree House hospice, which does such a fantastic job in West Sussex. Does she acknowledge that, because of medical technological advances, many of these children will live for much longer than was anticipated many years ago, and for many of them this is about not care in a hospice but outreach care outside the hospice? It is therefore important that we have good support packages for the parents, including respite and care over a longer term, and that we are more imaginative in the way we build houses, so that children with life-limiting conditions can live in houses—perhaps new social house build—that reflect the increasing physical demands that they will have, so they can stay in their homes to be cared for appropriately?

[Dr Johnson]

I thank my hon. Friend for his intervention. He is indeed right. The demand for children’s hospice care is rising because there has been an increase in the number of children with life-limiting conditions and because those children are living longer and therefore require care for a longer period. The cost of providing that care is also increasing at a rate faster than inflation and faster than the money that the sector receives, which means that in some areas the money received has fallen in real terms.

Baby Loss Awareness Week

Debate between Caroline Johnson and Tim Loughton

Tuesday 9th October 2018 Commons Chamber

[Dr Caroline Johnson (Sleaford and North Hykeham) (Con)]

I wish to join my colleagues in commending the Members who have so bravely recounted their own experiences of baby loss here tonight and at last year’s baby loss debate. As many have said, the loss of a baby is one that no parent should ever have to bear. I am fortunate not to have suffered such a loss, but as a children’s doctor I have, unfortunately, been the bearer of such bad news on too many occasions.

In my experience, the first reaction of a parent confronted with the tragic death of a baby is to ask, “Why? Why did this happen? Why my child? Why me?” In these agonising circumstances, answers as to why this situation has occurred can help to provide respite. The second reaction, one that is testament to the incredible empathy human beings have, even in the most difficult circumstances, is the desire to ensure that lessons are learned from their personal tragedy so that no one else has to endure that same heartbreak. I am in awe of colleagues, such as those here this evening, who have been through such a traumatic experience and found the strength not just to share that experience, but to use it to campaign successfully for improvements in care and to highlight areas to improve so that others do not experience such suffering in the future. I commend the work of the all-party group and my hon. Friends the Members for Colchester (Will Quince), for Eddisbury (Antoinette Sandbach) and for Banbury (Victoria Prentis) for their work to develop the bereavement care pathway. I have worked in hospitals where there has been excellent bereavement care, with the bereavement suite that has been described, and in others where the care has been less well developed, and I have seen the importance of the national bereavement care pathway. I congratulate them on it.

Although he is no longer in his seat, I also congratulate my hon. Friend the Member for Thirsk and Malton (Kevin Hollinrake) on his private Member’s Bill, which has developed child bereavement leave. As my hon. Friend the Member for Colchester has said, it will enable mothers to have an extra two weeks of maternity leave and fathers to have a doubling of their leave—some extra time to reflect and be at home with their family.

One recent improvement that the Government have made is the introduction of independent investigations by the Healthcare Safety Investigation Branch, which will look at every case of stillbirth or life-changing injury. That will help to meet the needs of parents in respect of that first question—“Why did this happen?”—and to prevent it from happening again. When the lessons are disseminated throughout the health service, doctors and midwives will be able to learn from previous experience to ensure that problems do not occur in future. It will be important—I look to the Minister to respond on this—to ensure that health professionals can speak openly in investigations without fear of blame. A blame culture will deter people from speaking openly and prevent improvements to patient safety. I have spoken numerous times in the Chamber about patient safety, and I am hopeful that the national roll-out of investigations will help us to meet the NHS’s goal of becoming the safest healthcare system in the world in which to give birth.

One development in neonatal care that I have seen in my 17 years of practice is the increasing centralisation of neonatal care, with the smallest and sickest infants now transported to specialist centres. I have worked in these centres and, although they provide exceptional care, they are often many miles away from the hospital where the child was first admitted or where the family live. For example, if a baby’s family live in Sleaford and North Hykeham, their nearest tertiary centre is in Nottingham. If the centre in Nottingham is full, the family may be sent many hours away to Norwich, Sheffield or Leicester. For working families on low incomes, the need to visit their sick baby several hours away imposes significant travel costs. Some families go through intense financial difficulty to meet that need to travel, while others have the distress of being physically unable to travel to see their baby as often as they would wish because they do not have the money to get to the tertiary centres. I raised the very same issue in the debate last year and would be interested to hear an update from the Minister on any measures being taken to help struggling families, many of whom work, to meet the travel costs in such an extremely distressing situation.

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

My hon. Friend makes a good point about safety. In respect of smaller hospitals retaining maternity services, some years ago there was an attempt to downgrade Worthing Hospital and St Richard’s Hospital, such that they would lose their maternity departments and the service would be centralised in Brighton or Portsmouth. Fortunately, we defeated those proposals, and Worthing maternity department is now rated outstanding. It is also rated as the safest maternity department in the country; indeed, many mums now come from Brighton to Worthing because of its success. There is clearly a case for larger specialised hospitals for particular ailments and problems that need specialist treatment, but in most cases we need a good-quality, safe and trusted maternity service closer to where the parents live.

[Dr Johnson]

I congratulate the hospital in Worthing for its outstanding success. My hon. Friend is right that there is a balance to be struck between the centralisation of care for babies who require very low-volume but high-specialist care, and the need for care to be delivered as close as is reasonably practical to the individual family concerned. That is true of all medical specialties, really. In the case of neonates, we probably have the balance roughly right, but a trend may be starting whereby people ask for things to be centralised that in my perception do not really need to be centralised. As a professional, I often see babies who are not returned to the step-down care as quickly as they could be. Babies are sometimes kept in the tertiary centres for longer than is absolutely necessary. There are complex reasons for that, but I would be grateful if the Minister looked into the issue so that babies can be returned closer to home as soon as possible.

I welcome the Government’s ambitious aims to halve the rate of stillbirths and neonatal deaths by 2025. That will be possible only by reducing the number of pre-term deliveries, which are the leading cause of neonatal death in the UK. The Department of Health and Social Care’s goal of reducing pre-term birth from 8% to 6% will require a lot more research and intervention. We have a healthier population of women, but the number of pre-term babies continues to increase. More funding is needed for pregnancy research, and particularly for research into the causes of pre-eclampsia, cervical length and infections such as group B strep, as well as for the identification of small babies with early scanning. There must also be more work to discourage smoking, which we already know is an established risk factor for pre-term delivery. I welcome the previous Secretary of State’s saying in November 2017 that the Government will reduce smoking during pregnancy from 10.6% to 6% and raise awareness of foetal movement. All those things will contribute towards the reduction of the number of neonatal deaths and stillbirths. Through that work, the Government are best placed to meet their “halve it” aim, and in doing so save 4,000 lives.

Finally, I wish to discuss those babies who die in the post-neonatal period—that is, under the age of one but after 28 days of life. Currently, 1.1 in every 1,000 babies die in the post-neonatal period. The major reason is babies having congenital malformations, and the second most common reason is sudden infant death, the rate of which has recently increased, although the cause is not clear. What is the Minister doing to identify the reasons for the recent increase in sudden infant deaths? What is being done to prevent the number of sudden infant deaths from rising further and, indeed, to bring it down?