Children’s Palliative Care

Debate between Jim Shannon and Caroline Johnson

Monday 1st July 2019 Commons Chamber

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

The subject of tonight’s debate is not an easy one to talk about, but it is very important. This evening, I am going to talk about the 49,000 children throughout the UK who have life-limiting conditions.

As a consultant paediatrician, I have looked after quite a number of these children over the years. I have been the person who has made that diagnosis, who has given that devastating news to families, who has looked after these families during various different points of the journey and, indeed, who has been there in those final minutes and hours. Through that time, I have watched as some of these families have just about managed, but others have really struggled to cope at all and have gone from crisis to crisis. For me as a paediatrician, the opportunity to be a politician gives me the chance to stand here and advocate for those families and for those children and to use this platform—this House—as a vehicle for change, and to make these treatments and the care that these children receive much better.

Children’s palliative care is not, as it is often misrepresented to be, only about the care that someone receives at the very end of their life: it is about improving the quality of their life while they are living with that life-limiting condition from the point of diagnosis. I shall take as an example a child with Batten disease. A child with Batten disease may present as apparently healthy, but they have a gene that will ultimately cause neuro-degeneration. So they will lose the skills that they had—the walking, the talking. Their skills will go backwards, until they become increasingly dependent on their families. Often, they die of chest infection.

The care for those families involves helping the child, the family and the siblings to understand the diagnosis and prognosis, providing support such as physiotherapy to keep the child mobile for as long as possible, providing home adaptions to train their parents in how to use things such as Mic-Key buttons, to provide tube-feeds and to use wheelchairs and hoists in the care of their children, and helping them with medical things such as seizure management, giving medication and speech therapy, as well as with how to navigate the benefits system, applications for a blue badge, education and when to move from mainstream into more specialist provision.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Lady for bringing this matter to the House. There will not be a single elected representative who is not aware of someone who has been through this. Is she aware that the money that each children’s hospice has to spend each year to meet the needs of seriously ill children and their families has grown to an average of £3,681, which is a 4.5% increase between 2016-17 and 2018-19, faster than the rate of inflation, yet the funding has been cut or frozen for each of the last three years, leaving children’s hospices struggling to make ends meet? Does she share that concern, which we all have?

[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.

Infant First Aid Training for Parents

Debate between Jim Shannon and Caroline Johnson

Wednesday 3rd April 2019 Westminster Hall

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

I congratulate my hon. Friend the Member for Truro and Falmouth (Sarah Newton) on securing this important debate. She has been a champion of raising awareness to reduce avoidable deaths through working with the UK Sepsis Trust—sepsis is also a major killer of adults and children—and I am delighted that she has now lent her voice to the cause of infant first aid training for parents. As a paediatric consultant, this is an issue close to my heart.

My hon. Friend highlighted the alarmingly high number of cases where something could have been done to prevent a child’s death: 21% according to the Royal College of Paediatrics and Child Health. I should declare my membership of that organisation. Working on a children’s ward for the last 15 years, sadly I have seen far too many of those 21%. However, I have also seen children whose lives were saved by passing members of the public, as was described earlier in the case of Rowena, by doctors or health professionals, or by visiting family members who just happened to spot something and were able to help.

My hon. Friend the Member for Truro and Falmouth powerfully described a case of a child choking. As we approach Easter and then summer, mini-eggs and grapes are particular culprits. Advice should include how to manage a choking child, as well as simple measures to prevent choking. Chopping up grapes into little pieces, sitting down while eating and not running about with things in the mouth are helpful in preventing choking, but it can still happen to anybody, young or old, at any time. We should all know some of the manoeuvres that can help, such as the one my hon. Friend described in the case of the baby choking. The baby should be held face down across the adult’s legs, so that the baby’s head is lower than the adult’s knee, and blows should be applied to the baby’s back, between the shoulder blades.

That sort of information does not take long to learn, but can have a huge impact and can be responsible for saving somebody’s life. The information is already provided to a number of parents. I have delivered infant first aid to parents whose children have been in hospital. Each of the neonatal units that I worked on in the midlands provided first aid training to parents before they left hospital, in part because pre-term babies are more vulnerable when they have just left hospital and in part to provide parents with the confidence to manage very small babies when they go home, as was described by my hon. Friend the Member for Moray (Douglas Ross). Training is also provided routinely to parents who have had a child die in the past, but obviously we want to look at prevention.

The hon. Member for Belfast South (Emma Little Pengelly) talked about contact with health visitors and midwives. Evidence shows that parents are particularly receptive to messages about healthcare and first aid when they have just had their baby or when they are expecting their baby, as my hon. Friend the Member for Moray mentioned. That is a time before life becomes really busy, when one can reflect on the joy that is to come and be well prepared for it.

There are lots of opportunities for first aid training to be provided. There are antenatal classes, where training can be signposted or provided, as well as nurseries. I strongly believe that the practical advice should not just include what to do when things have gone wrong, but how to stop them going wrong in the first place. My hon. Friend the Member for Moray mentioned burns. I remember the case of a child who walked past a lit candle; it caught her dress and she got severe burns to her whole front. In that case her mum knew what to do—drop her to the floor, roll her over and stop the burning—and treated the situation appropriately, but even so the injury was severe and could have been prevented if the candle had not been left on such a low table.

Using seatbelts and car seats are among other simple measures that we know we should to do. One major cause of preventable deaths in children is drowning, so there should be simple advice about making sure that children are not left unsupervised around open water. I have seen this particularly in situations where there has been open water and a group of people, often at a big family event, where everybody is looking after the child but there is not one specific person watching to see that they do not end up in the water. At one of my children’s christenings, I was upstairs in a bedroom on the other side of the house when I saw from the window that a friend’s little boy had gone towards the small pond we had in the garden and that he was on his own. I ran downstairs and was fortunate that he had not gone into the pond by the time I got there. My husband was out with a digger the following day getting rid of the pond. It was not worth the risk, but if people have such ponds they need to be carefully managed. I have certainly seen children drown in those situations.

[Jim Shannon]

One thing that can be neglected in homes is fluids in cupboards. Years ago, when we were younger, fluids were kept in lemonade bottles and similar containers, and children did not realise that. I well remember when my second boy was very young—he was the one who everything seemed to happen to—he managed to get a gulp or two of Brasso. He had the shiniest backside that any child ever had, but that is by the way. It can easily happen that a fluid can be drunk or absorbed by a youngster. We need to take steps in our own homes to ensure that all fluids are under lock and key, wherever they may be.

[Dr Johnson]

I take the hon. Gentleman’s point about fluids. I noticed when I bought some washing detergent last week that the lids now have a clasp that is especially difficult to open, so children cannot consume those little bubbles. No one is ever perfect; I know that if I looked for hazards to my three children in my own home they would be there. So far, thank God, I have been lucky and I hope that will continue, but we can all do things to reduce risk.

I am glad that the Government are committed to ensuring that all early learning staff have first aid training, but it is time that they did the same for parents. Since 2016, all newly qualified level 2 and 3 early years staff must hold a current paediatric first aid or emergency paediatric first aid certificate. The Millie’s Mark quality scheme, which was commended by my hon. Friend the Member for Cheadle (Mary Robinson), was also launched in 2016. It requires childcare providers to train 100% of their staff in paediatric first aid, not just to have one trained person on site at any one time. The 300th nursery gained Millie’s Mark last summer, which was a cause for celebration, and I am proud those nurseries include Dappledown House Nursery and Appletree Corner Daycare in my constituency. My son’s nursery has offered parents first aid training in the last couple of months, so the message is getting out there and that needs to continue.

The efforts to provide safety in schools should now be matched to provide safety in the home. The time and financial investment needed to provide that is small. It costs £30 for two and a half hours of invaluable training on some of the most common causes of avoidable death, including choking, and ways of providing resuscitation. Providing preventive medicine is one of the best investments we can make. As well as avoiding tragedy, it takes pressure off our NHS services, which are facing ever-increasing demand. It is the right thing to do for both our children and our country, and I am glad to lend my support to this cause today.

Children Act 1989 (Amendment) (Female Genital Mutilation) Bill [Lords]

Debate between Jim Shannon and Caroline Johnson

3rd reading: House of Commons & Report stage: House of Commons
Monday 11th March 2019 Commons Chamber

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

I congratulate my hon. Friend the Member for Richmond Park (Zac Goldsmith) on introducing the private Member’s Bill to deal with this important issue.

Last week we celebrated International Women’s Day, a joyous occasion on which women and girls came together to celebrate their achievements, the women who helped them to realise those achievements and our victories on the long road to equality. Today’s debate reminds us of not just how far we have come, but of how far we still have to go.

FGM is a barbaric practice that has no place in the world today. It is often, as other Members have said, performed by a local cutter—not by someone with any medical skills—in a barbaric way without pain relief. The affected women have their genitals cut into such a state that they end up with significant long-term consequences. As well as the short-term consequences of pain, trauma, shock and bleeding—in some areas of the world where there is little access to medicine, such bleeding can lead to serious infection, sepsis and death—women may experience difficulties passing urine that can go on into the long term, incontinence, frequent and chronic urinary tract infections, pelvic infections, problems with menstruation, kidney failure, cysts and abscesses, difficulties with sexual intercourse and complications with childbirth.

Complications with childbirth are particularly prevalent among those who have had the procedure of infibulation, which is where the vaginal opening is made much smaller. There is the possibility of reversing or undoing that procedure during pregnancy in advance of labour, if midwives and surgeons are aware of it, but women may be left with significant mental health problems afterwards. Some women feel very uncomfortable about the fact that the procedure has been undone, and their family may treat them differently as a result. Indeed, as other Members have suggested, some women will have been sewn up by the time the next pregnancy occurs.

[Jim Shannon (Strangford) (DUP)]

The hon. Lady has clearly outlined what needs to happen legislatively in relation to such physical and emotional abuse. Does she not agree that it is also time for a cultural change in the societies in which it occurs? If a cultural change comes into play, methods and habits will change, so it has to start there.

[Dr Johnson]

I thank the hon. Gentleman for his intervention. He is absolutely right, and I will say more about that later in my speech.

Given how barbaric this practice is, it is surprising how common it is, with more than 200 million women in the world said to be affected by it. Recent statistics show that 150 British-born women were identified by NHS Digital as having had the procedure, and that 85 of them had had it here in the United Kingdom. It is estimated that around 130,000 women in the UK are at risk, and 1,000 new cases have been identified by the NHS this year.

While researching for this debate, I read about the case last month of the first person to be convicted of FGM in this country. It involved a mother who was found guilty of FGM. Her daughter was only three years old. That young girl was pinned down in her north London home and had her genitals cut and partly removed. Her mother claimed that this had been due to her falling on to a cupboard door. In my work as a paediatrician, I have heard some tall stories about how injuries to children might have occurred, but it was clear that the jury did not believe the woman in that case.

Children of that age do not have enough strength to escape the knife or to escape their attackers. That is why we need laws to protect these vulnerable children from a harm that is sadly often perpetrated by those who are closest to them and who should be protecting them the most. I am proud that the UK is a world leader in introducing legislation in this area. Since the passing of the Prohibition of Female Circumcision Act 1985, it has been illegal to mutilate the clitoris or the labia, or to help someone to do that.

The Government improved things further in 2003. Recognising that girls and women were being taken abroad for these procedures, they increased the territorial reach of the legislation so that UK nationals or UK permanent residents taking someone overseas or allowing or helping the procedure to happen overseas would also be guilty of a crime. This was widened further in 2015 to ensure that people who failed to prevent the procedure from happening were also guilty of a crime, and to provide anonymity for victims. The FGM protection order was also created at that time.

Updating these laws is a continuous process to ensure that children are protected. It is right that we have strong sentences of up to 14 years for those found guilty of FGM and up to seven years for failing to protect a child from it, but it has been difficult to get convictions. We need to look further into the reasons for that, and particularly, as the hon. Member for Strangford (Jim Shannon) says, into how we can change the culture in society so that FGM does not happen in the first place.

So what does the Bill do? It puts in place a crucial amendment to the Children Act 1989 that adds children’s powers into family proceedings. The Act gave powers to the courts to impose an interim care order, a care order, an interim supervision order or a supervision order. What do these orders do? Essentially, they allow the courts to share parental responsibility and allow local authorities to take children into care. The test that is applied is that there should be reasonable grounds to believe that the child has suffered or is at risk of suffering significant harm. I do not think that any Member in the House would doubt that the risk of FGM would meet that threshold. At the moment, however, if an FGM protection order is being applied for and there is also a desire to apply for an interim care order, they need to be applied for separately, which takes time and creates increased procedure. The Bill will ensure that both can be dealt with in a single process.