Infant First Aid Training for Parents

Jim Shannon Excerpts

Wednesday 3rd April 2019 Westminster Hall

[Sarah Newton]

The hon. Lady makes a very good point. I hope that in our small way—as a result of this debate, the people watching it from outside the Chamber and the media coverage we secure—we will encourage people to take up that opportunity. That is a really good idea.

I have been listening very much to healthcare professionals in my constituency. Dr Simon Robertson, a consultant paediatrician at the Royal Cornwall Hospitals NHS Trust, told me:

“I have been a consultant general paediatrician for the last 12 years. I see children referred into hospital from their GPs, and the emergency department.

From the view of a general paediatrician a child illness and resuscitation course for all parents makes practical sense for the families and NHS services.

Parents are expected to make important decisions about their children’s health and about seeking medical advice. But we know they find it difficult to work out if their child just has a minor viral illness, or something more serious. Unfortunately not all parents are educationally equipped to read instructions from their red book, NHS Choices or health advice apps like the ‘HandiApp’. For them, we know they really need time and practice in a supportive environment to learn these decision making skills. We repeatedly see this in the families we teach resuscitation to on the wards.

What is needed in my opinion, is a course for all parents and those in child care on how to manage the common emergency problems like choking, diarrhoea and vomiting, a seizure, recognising sepsis, managing a head injury, or in preventing accidents, drowning or cot death. These learnt skills could help keep children safe and healthy, so should be the skills highly valued by families. Vitally, early action may help prevent some medical emergencies deteriorating to life threatening illness.

This can only be good for the health of children, and for children’s acute NHS services.”

I completely agree.

In 2013, the Department for Education undertook a confidential inquiry into maternal and child health in England. It conducted a meticulous audit of deaths of babies and children, and reported identifiable failures in children’s direct care in just over a quarter of deaths, and potentially avoidable factors in a further 43% of deaths. The University of Northampton’s 2017 report “Before Arrival at Hospital: Factors affecting timing of admission to hospital for children with serious infectious illness” stated that parents often find it difficult to access relevant health information or to interpret symptoms, and that it can even be difficult for GPs to determine how serious a case is in the early stages.

I have been working with Cornwall Resus, which was established in 2012 by two paediatric nurses to give parents and carers the necessary skills to empower them to recognise when their baby or child is unwell and to respond appropriately. It runs courses for parents in community centres around Cornwall. Those courses last two to two and a half hours and include practical training on choking and resuscitation using lifelike dummies, with lots of time for questions and discussion at the end. I know that I would not be happy to undertake those actions unless I had practised them on a dummy first; having just looked at instructions or a diagram, I would still be very nervous about the amount of pressure to apply, so using dummies and having practical sessions and reassurance is really important.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Lady for bringing this subject forward for consideration, and I commend her for the work she did as a Minister. I am very pleased to see her active on the Back Benches with the rest of us. I became a grandfather for the third time just before Christmas, when my grandson Austin—I already had two granddaughters—was born. I am very mindful that parents are immensely stressed after the birth of their baby, given the care babies require. For each parent to have just a bit of knowledge about these things at that time can be the difference between life and death. Does the hon. Lady agree that there is an opportunity, through the antenatal classes that mothers do with their local trust and GP, to instil in parents the basic skills she refers to?

[Sarah Newton]

I thank the hon. Gentleman for his contribution. I will come on to what I would like the Government to consider doing. I do not think we should be prescriptive about how this training is enabled. Lots of organisations provide such training—Kernow Resus is one such organisation, but we have also heard about the Red Cross, St John Ambulance and Millie’s Trust—and of course there is the NHS workforce themselves: maternity nurses, and healthcare professionals who visit families at home. We should not be at all prescriptive about how we might enable this training, but it is important that all parents have the opportunity to participate.

Most courses cost around £30, which will seem to most of us like a very modest investment, but not every parent will be able to afford that. That will be a real barrier for some families. That is why I would like the Government to enable universal access to high-quality, evidence-based training delivered by fully qualified providers. That would give us the opportunity to reduce morbidity and mortality and, importantly, family distress. It would also help tackle the associated costs of treatment, hospital admissions and even possible litigation. We have seen huge improvements in child and infant health in our country. The number of deaths of babies and small children has fallen significantly, but it is still far too high, so I really hope that the Minister will consider seriously how we might take forward this relatively modest, straightforward intervention.

The NHS is rightly focused on preventing ill health and injury, and I am delighted that the Government are investing so much in it. I am sure everybody in the Chamber is fully supportive of that investment. It would require only modest investment to pilot this training in a couple of geographical areas and work with a couple of local commissioning groups to see how they might go about delivering it. We have heard about a range of options they might pursue. By giving commissioning groups responsibility to see how they might go about that, we could collect proper evidence about not only the impact on families and the reduction of deaths and harm to children, but the impact on acute trusts and primary care in an area if, as a result of being more confident, parents do not engage with the NHS quite so much.

This would be a small but vital step. It would be such a positive contribution. We would have more Rowenas, and far fewer families would have to cope with the dreadful grief of losing a loved one.

--- Later in debate ---

[Douglas Ross]

I fully endorse what the hon. Lady said. If there is not time or there are other constraints that mean a first aid element cannot be included in an antenatal class, perhaps there should be a signpost saying, “This is something you can consider. Here are some of the organisations who could do this,” just to put it on people’s radar. They are very excited about the birth of their child and fascinated by the birth process, which they have gone along to learn about, so just mentioning that may be a trigger that would make some parents consider, “Actually it is important to go to that organisation, or another, to get that training.”

[Jim Shannon]

I congratulate the hon. Gentleman on the birth of his son, which I would have done anyway. Will he be a footballer or a referee—who knows?

There is another option: the health visitor calls to check on the child and the mother, and there is a follow-up after birth. There are many ways other than statutory ways of doing this.

--- Later in debate ---

[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.

Mental Capacity (Amendment) Bill [Lords]

Jim Shannon Excerpts

Ping Pong: House of Commons
Tuesday 2nd April 2019 Commons Chamber

[Kevin Foster]

My hon. Friend makes a strong point. We should not just assume that once a DoLS is in place it will be there for life. For some people, it may apply during a particular period of treatment or time, and things will fluctuate for some people if they recover to a point at which a DoLS is no longer appropriate because they are able to make their own decisions. As he says, the appropriate records must be kept to ensure that that is properly reviewed and borne in mind, so that a decision cannot be made that someone should be subject to this forever. There should be a rolling review, to ensure that those in charge of caring for a person and those overseeing the care are satisfied that it is still the appropriate measure, given its impact on the person’s life.

I do not wish to prolong the debate, given that there is consensus across the House, which is welcome. The Bill will be better for having these substitute amendments, inspired by the Lords amendments, and on that basis, I hope the House will endorse them.

[Jim Shannon (Strangford) (DUP)]

It is always a pleasure to follow the hon. Member for Torbay (Kevin Foster), as I do on many occasions. I agree with what he said. First, I thank the Minister for her commitment, for our comprehensive discussions and for making herself available for each and every person who wished to have input into this process, and hopefully the changes that the Government want to see will be passed.

The Government have gone to some lengths to ensure that this Bill replaces and improves existing legislation surrounding the deprivation of liberty as a matter of pressing urgency. The current system is not fit for purpose—many people in this Chamber and outside it feel that—and this legislative change by the Government is what we want to see.

The Bill implements the Law Commission’s recommendations, introducing a new system for people who lack capacity and need to be confined for care and treatment, ensuring that the system protects vulnerable people, is person-centred and includes a strong role for carers and families. I have had a chat with the Minister about this, and the Bill will also ensure that supported people and their families are supported and included throughout the process. That is very positive.

The supported person will be afforded their rights throughout the process by an appropriate person. The appropriate person will normally be a family member. Carers and families will be given a stronger role, with an explicit duty to consult them and the supported person. As someone who cares, along with my mother and son and others, for my brother Keith, who was in a motorbike accident some 15 years ago, I know the importance of the carer’s role across the whole process.

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

The hon. Gentleman makes an important point. For far too long, families have been left out of the equation when they should have been involved. There is an argument for looking at carers’ training and their suitability, perhaps through certification, because there have been lots of cases of abuse in the past. It has gone on for years, and we have to pay particular attention to that. The Care Quality Commission should be improved; it does not have the numbers to do the job. I often follow its reports in Coventry, so I have a good idea of its needs. Does he agree that those areas could be looked at?

[Jim Shannon]

I certainly do. The Minister has responded to the concerns of the hon. Gentleman, myself and others in a spirit of generosity, and perhaps this legislative change does that.

I welcome moves taken to make the definition of deprivation of liberty as strong as possible. What the Government have done is clear. It is vital that the definition links back to the European convention on human rights and provides a sturdy basis to protect vulnerable people. That is good news.

Members have referred to the 125,000 people who are currently deprived of their liberty without the necessary protections in place. Through this legislative change—which will not be opposed; a very helpful attitude has been adopted in the House of Lords and on both sides of this House—can the Minister indicate what will be done to reduce the backlog?

The Government have been lobbied and have consulted the Local Government Association, charitable bodies and other interested people and groups. As a result, we have a vital opportunity for long-awaited reform, and the Bill needs to be passed.

Mr Deputy Speaker, I gave you my commitment that this would be a short contribution, and I intend to keep to that. I want to finish with two quick questions to the Minister. Can she explain how the role of an appropriate person will support and protect vulnerable people in the proposed new system? Secondly, will she confirm that the needs of the supported person and their families will be put first?

[Mr Deputy Speaker (Sir Lindsay Hoyle)]

Just to help, the Minister would need leave to respond to those questions, so the hon. Gentleman is putting pressure on for something that is not available at the moment.

[Jim Shannon]

I would never put pressure on the Minister—not in a million years; I know my place. I suggest gently to her that those two things could be looked at.

NHS Pension Scheme: Tapered Annual Allowance

Jim Shannon Excerpts

Tuesday 2nd April 2019 Westminster Hall

[Paul Masterton (East Renfrewshire) (Con)]

I beg to move,

That this House has considered the effect of the tapered annual allowance on NHS pension scheme members.

I have been aware of this issue for some time, as a local MP and as a former pensions law practitioner. Primarily through the work of the journalist Josephine Cumbo at the Financial Times, it has come to light that it is significantly more widespread and has much more serious implications for the NHS than I had originally understood.

I do not want to take up too much time on what the annual allowance taper is and how it works, partly because it is boring and incredibly complex, but a small amount of background is needed before explaining why it is an issue in the NHS and the consequences that seem to be flowing from it.

The tapered annual allowance was introduced from 6 April 2016. In short, it meant that from the 2016-17 tax year, a reduced annual allowance may apply to all pension savings by or on behalf of a member, depending on the level of taxable income within the tax year. It applies to individuals with a threshold income of more than £110,000 and an adjusted income of more than £150,000. For every £2 that an individual’s adjusted income goes over £150,000, their annual allowance for that year reduces by £1. The minimum reduced annual allowance someone can have is £10,000.

It will not be a surprise that the calculations of threshold and adjusted incomes are not simple in the least. They are massively confusing and make it very difficult to predict what tax bill will be incurred. As it cuts the annual allowance for the current year, an individual has no idea how much pension saving they can make.

[Jim Shannon (Strangford) (DUP)]

The Financial Times reported that some doctors, GPs and dentists will receive a potential tax bill of £80,000. Does the hon. Gentleman agree that we and this Government have a duty to ensure that NHS staff have all the information so that no one faces unexpected tax bills?

[Paul Masterton]

The hon. Gentleman is absolutely right. One of the key issues is that because it reduces the tax allowance in the current year of work, it is impossible to work out what the annual allowance will reduce to, and people cannot plan. I will go on to raise some examples from my own constituents, as I am sure other hon. Members will want to do.

Pancreatic Cancer

Jim Shannon Excerpts

Tuesday 2nd April 2019 Westminster Hall

[Nic Dakin]

My hon. Friend is right: speed of treatment after diagnosis is an issue, and I will emphasise that in my speech.

Pancreatic cancer is the quickest-killing cancer: only one in four people survive a year and fewer than 7% of those affected in England will survive for five years or more. Those are appalling statistics, and they have not improved in this country in decades.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Gentleman, who has been a spokesman for pancreatic cancer treatment and many other things in this House. I always look to him personally for his lead in these things. In the background reading I did before the debate, I saw that the latest findings showed that overweight 50-year-olds have a 25% higher chance of having pancreatic cancer. I never knew that before. That not only shows the need for people to be aware of how their weight affects their long-term health, but is a red flag that the number of pancreatic cancer patients could rise. If being overweight can lead to pancreatic cancer, we must ensure that appropriate treatment is available for that rising number,.

[Nic Dakin]

The hon. Gentleman is exactly right; the more we learn about this disease, the more we can try to do things to prevent it and to support people so that they can get early diagnosis and treatment. The chances of survival for Kevin, the husband of my constituent Maggie Watts, were no better than those of his mother, who died of the same disease 40 years earlier. Yet other countries are doing much better; Belgium and the USA have double the survival rates of the UK. We need the Government to work with the fantastic pancreatic cancer charities—Pancreatic Cancer UK, Pancreatic Cancer Action, Pancreatic Cancer Scotland and the Pancreatic Cancer Research Fund—as well as other stakeholders to deliver a step change in outcomes for pancreatic cancer.

Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 26th March 2019 Commons Chamber

[Matt Hancock]

I am happy to look at all approaches to how we can reduce the overuse of antibiotics to preserve them so that they work effectively where they are needed. Of course GPs have a role to play in that, and the number of antibiotics prescribed by GPs has fallen in recent years, but again there is much more work to do.

[Jim Shannon (Strangford) (DUP)]

Will the Minister outline whether his Department is willing to enter into an agreement with medical students to wipe out their student loans if they contract to carry out five years of GP service?

[Matt Hancock]

That is an interesting proposition and I would be happy to talk to the hon. Gentleman more about the idea. I was in Northern Ireland last week looking at medical services there and at what we can learn, and that might be another idea.

Bereavement Counselling

Jim Shannon Excerpts

Tuesday 26th March 2019 Commons Chamber

[Matt Warman]

I thank my hon. Friend for that intervention, and that is why in some ways I am calling on the Government to have ongoing support for those who are recently bereaved and an open-ended offer of counselling on the NHS which can be accessed when they are ready, not at the easiest point for the NHS.

[Jim Shannon (Strangford) (DUP)]

I also commend the hon. Gentleman on securing this debate and telling his own personal story. Across the United Kingdom of Great Britain and Northern Ireland one in four people suffers from mental health issues, and many of them are a result of the grief from someone close to them leaving, especially when that is sudden. Early intervention is key, and I would like the Minister to respond on that. Does the hon. Member for Boston and Skegness (Matt Warman) agree that we should have early intervention through the use of Cruse and perhaps other groups—I am thinking of church groups and ministers who are on call if needed?

[Matt Warman]

I thank the hon. Gentleman for his intervention, and I agree with him and will mention that issue in a few moments.

There should be a dedicated mental health helpline provided through the NHS, which under the long-term plan will be accessed via 111. It is important that there is an understanding within that that bereavement for a long time is an exacerbating factor in loneliness, suicide and more; it is a red flag that should be recorded for a long time.

The importance of such ongoing support cannot be overstated. We have spoken in this House many times about the tragedy of the rise in male suicide; while things are improving there is still a huge stigma around men feeling unable to open up and show their emotions—although I am hopefully doing all right today.

This is why it is particularly important to normalise the support around bereavement, and we must not leave it solely to those affected to reach out to organisations such as the Samaritans or Cruse. That registrar who I spoke to 10 years ago should have been trained to offer a signpost—although I confess that if he was or if he did I was in no state to listen—and the NHS and our volunteering strategy should include better plans to encourage more people to train as volunteer bereavement friends and counsellors, as in the hugely valuable work we see with Dementia Friends, or, as Sue Ryder has called them, the bereavement “first aiders”.

NICE Appraisals: Rare Diseases Treatments

Jim Shannon Excerpts

Thursday 21st March 2019 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to follow the hon. Member for South Shields (Mrs Lewell-Buck), with her passion for the subject matter and on behalf of her constituents, so well done to her. I thank the Backbench Business Committee for enabling this debate to take place. I was very pleased to go along to it with the hon. Members for Blaydon (Liz Twist) and for North Tyneside (Mary Glindon)—two formidable, diligent ladies who have put down their marker on this subject matter. I was very pleased to be the third in the trio involved, and well done to them for giving us the opportunity, on behalf of our constituents, to express our concerns today.

I am sure that, like me, most Members in the Chamber have been inundated with emails from people begging to be helped, and begging for the drug that they need to be made available. Every one of them has said that, and I do not believe that anyone can ignore it. It is not only in the emails, but in the interaction we have with our constituents when we hear their stories face to face.

I want to start with a good story and to say what happened—not, I have to say, through this Minister, but through the Home Office. I fought very hard to see medicinal cannabis legalised for my beautiful young constituent Sophia Gibson, and what a difference that has made in her life, as it has to the lives of others. Her parents had no option other than to uproot their family and move to Holland to get the treatment that Sophia needed. At the same time, they were respectfully knocking on doors and following the system through to a Home Office Minister, the Minister for Policing and the Fire Service, and getting clinical assistance in order to bring about a change. Eight months later, their daughter has been at school more than ever before in her whole lifetime. She has had substantially fewer admissions to hospital, and has attended school parties that were impossible—they were too much for her—without this medication. She is a very different young girl today because her parents, Darren and Danielle, fought the battle in the right way and in the right place. Today, we have all presented our cases for the right battle, in the right place, at the right time and with the right request.

Since that time, I have had many other parents coming to me and asking me to help secure the drug that their child needs. A mother in my constituency has an absolutely gorgeous two-year-old son—Lorcán they call him—whom Orkambi would help. Orkambi is a second precision medicine, which targets the root cause of the disease, and it would benefit about half the people with cystic fibrosis in the United Kingdom of Great Britain and Northern Ireland. Cystic fibrosis is a terrible illness that affects the lungs and digestive system of people with the condition, who have a median life expectancy of just 31 years old.

I say this very respectfully, and I hope it will be taken into account: Vertex Pharmaceuticals, NICE and NHS England must end the protracted negotiations for the drugs Orkambi and Symkevi. We must break the stalemate between the three parties and provide access to these drugs, which could so vastly improve the quality of life of my constituents and those of everybody here, as they deserve. They want and need that drug desperately.

I have often spoken about the need to allow people to access Orkambi on prescription, and I have often been beyond frustrated with the lack of movement between the drug company and NICE. There must be—indeed, there has to be—something that can be done to find a way forward, and I believe that it must be done in this House. Today, we look to our Minister and our Government to give us answers and, respectfully, the answers that we need. We must instruct the Department to negotiate a way forward to ensure that my young constituent and so many others like him can live a better life.

I was contacted by the Muscular Dystrophy Association regarding spinal muscular atrophy—other hon. Members have spoken about that condition on behalf of their constituents, and I will do the same. SMA is a rare inherited neuromuscular condition that affects lower motor neurons in the spinal cord. It leads to the gradual loss of someone’s ability to walk, crawl, move, breathe and swallow, and it requires complex medical support. About 100 children are born with the condition each year, and around 2,000 children and adults in the United Kingdom are living with SMA. Spinraza is the first and only treatment for patients with spinal muscular atrophy. It is meant to increase the body’s ability to produce a protein called survival motor neuron, which is essential for motor neuron health. The treatment is administered through an injection into the spinal canal. It is never an easy treatment, but if it provides an opportunity for better health, people should take it.

For children with SMA type 1, life expectancy is rarely longer than two years. Some children who have received Spinraza have seen their muscle strength improve, and have lived long enough to crawl and even walk. For those children, Spinraza has been a lifeline—perhaps I should say that Spinraza has been life itself, as that is the level we are talking about. Spinraza proved so effective in clinical trials for children with SMA type 1 —the most severe form of the condition—that the trial was stopped early so that all children affected by it could potentially access that treatment.

The Spinraza appraisal took almost 14 months, and currently 25 European countries—including Scotland in the United Kingdom of Great Britain and Northern Ireland—have already made it available, nearly two years after the European Medicines Agency granted it a licence. Although Translarna was eventually approved by NICE in July 2016, that was more than two years after the European Medicines Agency gave it a licence. Such lengthy delays to a process that could and should be significantly shorter have resulted in frustration and anxiety for many families who see a life-changing treatment within touching distance. They can almost reach out for it, but they can never get it, and that is where frustration creeps in. That group of people see a better life but are prevented from accessing it. There must be a better way of dealing with these issues, and we must find it or instruct the Department to find it.

My heart aches as a father and grandfather who would do anything for his children and grandchildren, and other right hon. and hon. Members would do the same for theirs. The block on life-changing drugs affects not only the child but the entire family. If a child or adult has a physical disability, their family also feel that and live with it every day. Many families in the UK do not have access to life-changing medication, and I wholeheartedly and sincerely urge the Minister and his Department to enter into talks, find a way forward, and do better so that people can live better. The Government have set aside £40 billion for extra health support. I welcome that, as do all hon. Members, and I gently suggest that some of that money should be set aside for life-saving drugs.

Services for People with Autism

Jim Shannon Excerpts

Thursday 21st March 2019 Commons Chamber

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to follow the hon. Member for Henley (John Howell), whose contributions are always well worth listening to. I thank the Backbench Business Committee for the opportunity to have this debate, of which I was happy to be one of the co-sponsors. I also thank the hon. Member for Bexhill and Battle (Huw Merriman) for setting the scene on behalf of the right hon. Member for Chesham and Amersham (Dame Cheryl Gillan), who would have been here had she not been detained elsewhere.

The National Autistic Society definition of autism sets the scene:

“Autism is a lifelong disability which affects how people communicate and interact with the world. There are approximately 700,000 autistic adults and children in the UK.”

Without the right support or understanding, autistic people can miss out on an education, struggle to find work and become extremely isolated. As an active constituency Member of Parliament, every week in my office I deal with and try to help people who have autism and their families, including on benefits, educational assessments and family issues and pressures.

The National Autistic Society’s “Too Much Information” campaign highlighted how, in spite of increasing awareness around autism, there is still a significant lack of public understanding, and there genuinely is. Research shows that although 99.5% of people in the UK have heard of autism, only 16% of autistic people and their families think that the public really understand them. Half the autistic people and their families said that they sometimes do not go out because they are worried about the public’s reaction to their autism.

All that is certainly true, but I was also sent a link to a few blogs by a parent in Strangford, who said:

“I don’t have the words to explain it but this is how I feel:”

It read:

“I am not a warrior mom. I am not a superdad.

I am tired.

I just want what everyone else has—time to enjoy my kids, without the constant, mind-numbing terror of worrying about their future.

I don’t WANT to be an activist. No-one does.

Nobody woke up one day and said ‘Hey, I want to take time and energy away from my family to fight for someone’s rights.’

Plus, I want to feel the positive effects NOW! I ain’t doing this just for other people, honestly, I am doing it so that I too can benefit from the changes.

So instead of patting me on the head, shaking my hand, congratulating me on how selfless I am, blah di blah blah blah…help a brother out…give a sister a break.

Do SOMETHING DEFINITE to help change things, NOW and for the next generation. Ask me, I have ideas.

Otherwise, miss me with the…platitudes, please.”

That is a heartfelt request from one of my constituents. I want to help this father who contacted me and who feels like that, and all the parents like him. We have a duty not to offer platitudes about rainbows and sunshine or individually unique snowflakes, all of which are lovely and touch the heart emotionally. We have a duty to provide physical support and practical advice. We have a duty to provide respite for parents who are on the brink of a breakdown, and for siblings who feel invisible as they strive not to add to their mum and dad’s concerns because they are dealing with enough. We have a duty to provide respite to the child and to introduce them to people outside their circle in a controlled and helpful way. I do not believe that we are fulfilling our duty.

In Northern Ireland, we are certainly not fulfilling our duty in the way that I would like us to. A number of families with children with challenging behavioural problems—children who have met the criteria to be considered for overnight care, which is so important—have been told that they will have to wait several years before they can access overnight respite care. According to the Northern Ireland Health and Social Care Board statistics for 2014-15, there were 4,031 children in need, known to social services and with a disability, and 1,210 children with a disability who had received respite care. There are 10 respite facilities across Northern Ireland, each of which has between five and eight beds that can be used to care for children overnight, but more than 1,200 children are trying to access those beds.

In my previous job in the Northern Ireland Assembly, I was pleased to be a member of the all-party group on autism. We fought a campaign over a period of time. The Autism Act (Northern Ireland) came into law in 2011, after I had left the Assembly, but I would have had some input into the process through the all-party group.

In the limited time I have left to speak, let me outline what the autism strategy has done in Northern Ireland. The autism strategy for Northern Ireland runs from 2013 to 2020, and the action plan ran from 2013 to 2016. We focused on the following issues: awareness; accessibility; children, young people and family; health and wellbeing; education; transitions; employability; independence, choice and control; access to justice; being part of the community; and participation and active citizenship. We published a progress report on the autism strategy for 2013 to 2020 and the action plan for 2013 to 2016. It is a pity that we do not have a functioning Northern Ireland Assembly, because these issues would fall under the remit of that Assembly, rather than here. The Assembly still has that responsibility, even though it is not functioning in the way it should be.

It would seem that we have got to the breaking point, which concerns me greatly. It would seem better to have in place a preventive scheme for the families of those who struggle and live the daily autism battle, so that they do not have to reach the breaking point. I am particularly pleased to see the Minister in her place; we will have a positive response from her, as we always do, and I look forward to that response. The overwhelming feeling that I get is that parents are weary—weary from lack of sleep; from fighting the same battles with the child every day; from dealing with people’s expectations of how their child should behave; from fighting to get recognition for their child and to have adequate support in place to reach their potential; and from knowing that their other children are not getting the attention they need. They are just weary, and they need more help, right now.

Health Inequalities

Jim Shannon Excerpts

Wednesday 20th March 2019 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Member for Telford (Lucy Allan) on bringing this issue to the House. I am always very pleased to support her on any issues that she brings to the House. They are always ones that I am interested in, and that is why we are all here—because we are all interested in this issue.

The issue of health inequalities is of grave concern to me, as I hail from what too often feels like the poor relation when it comes to health issues—Northern Ireland. Our NHS is stretched beyond capacity and without access to many services that the UK mainland has. I suspect that when we hear from the spokesperson for the Scottish National party, the hon. Member for Central Ayrshire (Dr Whitford), she will tell us how things are progressing in Scotland, and I always feel envious of things that are being done there. I wish that we could replicate them in Northern Ireland.

People in Northern Ireland do not have access to children’s heart doctors. Parents and their sick children have to fly to the mainland or travel to the Republic of Ireland. Over the years, a number of my constituents have fallen into that category. It is because we do not have enough demand on paper to keep a paediatric cardiology team in place, yet in practice far too many children are having to travel, with no family support, out of Northern Ireland to London or to the Republic of Ireland. They are treated unequally because, let us be honest, they come from Northern Ireland. The access that they have is not the same as people have on the mainland. The fact that they are going to London or to the Republic of Ireland is an indication of the problem.

Then there are those who suffer from rare diseases, who feel the inequality of suffering from something that is not common enough for there to be a focus on it or for funding to be put into it. That is heartbreaking. When we consider that 54% of UK cancer deaths are from rare and less common cancers, we suddenly realise that it is so wrong that there is such inequality in funding across areas including policy, services and research. In particular, symptoms of rare and less common cancers can be less well recognised or vague and, as a result, too many people are diagnosed late or through a presentation at an accident and emergency department, which generally means that outcomes will be much poorer.

I am not sure whether anyone here reads The Times, but there is a lovely photograph on the front of that newspaper today of a wee lassie who went to America to get proton beam therapy. It was a success, and that was one of the first ever examples of this. It is one of those heart-warming stories. It gives us encouragement when technological advances are made and there is an opportunity for health services elsewhere in the world to progress in such a way. It was good news that that young girl, who is now nine, was able to be back home with her family and her cancer was away.

We must address training on symptoms and publication and awareness of information to stop the inequality for those who know what to look out for with breast cancer but have no idea that the early symptoms of fast-spreading pancreatic cancer can seem like gallstones. Sometimes the issue is diagnosis and knowing the right symptoms. We must address the inequality of coverage and funding for rare diseases in the UK.

Those are not the only areas where I see inequality. I recently asked a further question regarding concerns that I have. I asked what steps the Department of Health and Social Care was taking to ensure that provisions relating to health inequalities and the life expectancy of people with learning difficulties and autism were included in the prevention Green Paper. It is important to address inequalities for those who have complex needs. Every one of us, as an elected representative, is each and every day impacted by cases involving complex issues—constituents who have not one ailment or problem, but multiple problems. That is the life we live. This was the response from the Under-Secretary of State for Health and Social Care, the hon. Member for Winchester (Steve Brine):

“The ambition of the Green Paper focuses on both reducing health inequalities and increasing healthy life expectancy. We are currently considering policy options, and will be mindful of impacts on people with learning disabilities and autism.”

I look to this Minister to perhaps provide more enlightenment on that question.

We need a more proactive approach for vulnerable people and more of a focus on the inequalities that exist for those who are slightly different healthwise and who process things slightly differently. It is safe to say that currently we operate in a postcode lottery for health. I understand the budgetary constraints and they are a fact of life, but it is imperative that there is UK-wide access to healthcare that is not impacted by someone’s address, illness or ability or inability to communicate. I say this gently to the Minister: simply put, we must do better.

Leaving the EU: Health and Social Care

Jim Shannon Excerpts

Tuesday 19th March 2019 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is always a pleasure to speak about this issue. I congratulate the hon. Member for Argyll and Bute (Brendan O’Hara) on setting the scene, and I support his request for the Minister and the Government to look at this issue. When I look at my constituency and at Northern Ireland more widely, I understand the criticality of this issue. So many Brexit issues need attention and urgent answers, but over and above Brexit, the NHS requires immediate attention.

I am pleased to see the Minister in his place; he seems to have been a fairly regular presence in Westminster Hall this last while in debates about issues that are his responsibility. It is also nice to see the shadow Minister, the hon. Member for Burnley (Julie Cooper), in her place. I look forward to her contribution, too.

My heart sank when an NHS staff member said to me, “Jim, being in the A&E is like living and serving in a war zone.” That shocked me and underlined the fact that we need urgent changes and more support for our NHS, not simply with respect to Brexit but to ensure the survival of that incredible system, which is overloaded, overworked and underfunded.

I am gravely concerned about the mental health of our NHS staff on the frontline, because of the sheer volume of stress they face. The hon. Member for Henley (John Howell) referred to mental health issues, in which I have a deep interest, as do other Members present. We should consider the mental health not only of patients but of staff. There is a lot of stress in Westminster at the moment because of Brexit, but stress among staff on the frontline of the NHS is at an all-time high.

Nurses are working on their off days; they feel so guilty that colleagues are working on understaffed wards and they are so interested in the job—it is a vocation for them—that they stay on, sometimes without the remuneration they deserve. That may be admirable in the short term, but in the long term it means we have exhausted staff, who work too many hours without enough rest. Their home lives and their family lives suffer as a result. The long-term mental health implications for those who are so focused on helping others that they neglect themselves must be addressed.

To address that, we need better working conditions, less reliance on the bank, and simply more staff working on the floor in wards and taking appointments. We need more GPs, so people can see a doctor when they need to instead of going to A&E because the next doctor’s appointment is not for three weeks. We must ensure that all NHS staff are able to stay in place, or that scenario will worsen. I welcome the Government’s recent NHS long-term plan, which confirmed that the workforce implementation plan expected in April will set out arrangements to help overseas recruitment. The Government have acknowledged the issue and are seeking to act in a positive way. When he responds to the debate, perhaps the Minister will provide some idea of where that is going.

EU nationals make up a sizeable proportion of the health and social care workforce and represent 10% of doctors, 8% of social care staff and 6% of nurses in the UK. They are an integral part of the NHS workforce. It is therefore recommended that the Government take steps to understand any potential impact of ending freedom of movement on the health and social care workforce. There are many options for how best to shape that workforce after the UK leaves the EU, but given our historical reliance on the recruitment of EU workers, it is important that the impact of ending freedom of movement is understood, and we must start a conversation immediately about how best to future-proof the sector. This debate provides us with an opportunity to highlight those issues, and it allows the Minister to respond with, I hope, the answers we seek.

The hon. Member for Argyll and Bute referred to many organisations—there are a large number of such organisations, and it would probably have taken him five or 10 minutes to name them all if he had tried. Specifically, however, Macmillan Cancer Support highlighted that improvements in the diagnosis and treatment of cancer mean that more people are surviving it or living for longer. Some 2.5 million people across the UK live with cancer, and that number is expected to rise to 4 million by 2030. Such figures are great news because they show that there have been significant advances in cancer research, cancer drugs and care, and that our NHS and healthcare system can do lots of good things and help people.

Given the need to support our growing population, we need an immigration system that complements the NHS’s long-term ambitions to improve cancer care across the United Kingdom of Great Britain and Northern Ireland. Across the wider workforce, primary and acute medical and social care staff shortages are impacting on people’s access to cancer care in hospitals and the community. There is a significant variation in vacancy rates, which in many places can be as high as 15% for chemotherapy nurses. In some areas, those shortages in cancer nursing staff are exacerbated by the fact that there is an ageing workforce—the hon. Members for North Ayrshire and Arran (Patricia Gibson) and for Argyll and Bute referred to the fact that the workforce is ageing, and we must prepare for that as well.

In many cancer services, more than 40% of professionals are due to retire in the next 15 years. That issue poses a significant challenge for our current workforce so we should focus specifically on those services, and on those who will be retiring and those who will replace them. That is why this debate is so important. There is a clear need to recruit and train younger staff in specialist and chemotherapy nursing, and that would go some way to countering that shortfall. Will the Minister consider that issue? Will he also consider writing off the student debts of those who serve in local GP clinics for five years? Similarly, the nursing bursary should be reviewed and uplifted, and perhaps we should also consider perks to encourage occupational health therapists to stay in their positions.

I think we have to consider something new when addressing these issues. This is not just about ensuring that immigration fills some of the gaps in our workforce, because we must also address the needs of local people and provide opportunities. Given the nature of our society and jobs, perks can be a methodology for doing that—it is not wrong to offer such measures, because if they bring in the right calibre of staff and help people to stay in their posts, that must be good news. In conclusion, all the issues that I have raised must be priority considerations for the NHS, especially in the light of us leaving the EU, and I seek clarification from the Minister about how they will be addressed.