Medical Cannabis under Prescription

Julie Cooper Excerpts

Monday 20th May 2019 Commons Chamber

[Julie Cooper (Burnley) (Lab)]

This has been a very powerful and emotional debate that has moved Members on both sides of the House. It has also been characterised by anger and exasperation on both sides. I thank the Backbench Business Committee for selecting this subject for debate.

I pay tribute to my former, much-respected colleague, Paul Flynn, for his excellent campaigns on this subject. Somewhere, he will be cheering us on and I hope that he will have more to cheer about by the end of this debate, when we hear the Minister’s comments. I pay particular tribute to the right hon. Member for Hemel Hempstead (Sir Mike Penning) and my hon. Friend the Member for Gower (Tonia Antoniazzi); their unflinching commitment to this cause does them credit. Thanks is also due in no small part to the all-party parliamentary group, whose dedicated purpose is to

“help secure…access to natural cannabis for medical purposes in the UK under prescription from a medical professional.”

The group has worked tirelessly to that end, highlighting the barriers that exist and posing constructive suggestions to remove them.

As the hon. Member for Reigate (Crispin Blunt) rightly said, we are not concerned today with criminals and illegal drug supplies. We are not concerned with the use of recreational drugs. We are considering a most important health issue. I welcome the fact that at long last the Government accept that the therapeutic use of cannabis is a public health issue and not the business of the Home Office. I trust, therefore, that we will never again see parents in possession of medicinal cannabis products accosted and treated like criminals. I refer of course to the disgraceful treatment meted out to Teagan Appleby’s family.

Cannabis has long been known to contain active ingredients that could have therapeutic use in the treatment of many conditions, including muscular dystrophy, Parkinson’s disease, Crohn’s disease, cancer, AIDS, sickle cell disease and many more. International research and real-life experience in the UK have shown that the active ingredients CBD and THC, in combination, can provide relief for these conditions. There are also strong indications that these medicinal cannabis products can have a transformational effect in paediatric epilepsy cases. In the UK, though, we have been very slow to accept this and even slower to act to help those who could be helped.

Other powerful drugs with significant street values, such as heroin and diazepam, have long been available on the NHS under the supervision and control of qualified clinicians. Such drugs are extremely harmful in the wrong hands, but, subject to the existing controlled drugs regulations, these products can be used beneficially. In recent years, we have made some progress and have begun to accept that cannabis could and should be available in the same way. This changing attitude has most definitely been driven by increased public awareness of the suffering of individuals, many of them children.

[Jim Shannon]

Just to reiterate what the hon. Lady is saying, my young constituent Sophia has not been hospitalised with an active seizure in 10 months. I quote her mum:

“Our little lady just amazes us every day and we are very blessed to be in this position but we can’t help but think of the thousands of other children and adults that could need this right now!!!!!”

Does the hon. Lady agree that we must ensure that we are making progress? This debate is about progress and moving forward, so it is important for the Minister to do just that.

[Julie Cooper]

I am grateful to the hon. Gentleman for his intervention, and I absolutely agree. There is the potential to help thousands. We must move forward at the earliest opportunity.

Members have raised some powerful cases on behalf of their constituents—adults and children who could benefit. I want to mention the experiences of the Griffiths family. Mrs Griffiths asked me to help her nine-year-old son, Ben. Ben suffers with severe intractable epilepsy. This means that he has up to 300 seizures a day and has come close to death on more than one occasion. At the new year, Ben was admitted to Alder Hey Children’s Hospital, where, during an 18-hour period, he was observed to have 200 seizures. Ben’s parents asked whether he could have access to CBD and THC, but they were informed that Alder Hey has a blanket ban on medicinal cannabis products containing THC. Ben was discharged and his discharge letter stated that his parents had asked for an illegal drug.

In desperation, the family have turned to a private neurologist and, thanks to him, since January this year, Ben has been taking medicinal cannabis CBD and THC. His condition is much improved and yesterday he had only four seizures. His family tell me that Great Ormond Hospital and Professor Finbar O’Callaghan, the head of the British Paediatric Neurology Association, have acknowledged Ben’s improved condition, but the family are still unable to get an NHS prescription to supply the medicinal cannabis that he needs. The private prescriptions for his treatment are costing the family £2,500 a month. The family cannot continue to fund what is for Ben life-saving medication and they fear they will lose their son. Mrs Griffiths asked me: “How sick does our child have to get before the NHS will help him?” I know that question will go to the heart of everyone in the Chamber today. In relation to the high costs of private prescriptions for this medication, we are seeing the development of an unjust two-tier system where those who can pay get access to vital medication and those who cannot pay go without. That goes totally against the very principles of the NHS of which we are so proud.

In July 2018, the chief medical officer published a report declaring that there was conclusive evidence of the therapeutic benefit of cannabis medicinal products and she recommended that the whole class of cannabis medicinal products be rescheduled under the misuse of drugs regulations. The Home Secretary listened and, on 1 November 2018, the Government took action to reschedule cannabis for medical purposes. This was a very welcome step, making it legal for doctors on the specialised register to prescribe unlicensed whole-plant cannabis products for medicinal use in the UK. On that day, hundreds of families across the country celebrated, believing that this meant that they would have access via the NHS to medicinal cannabis. Sadly, that has not been the reality. Not one single NHS prescription has since been written for whole-plant medical cannabis and the hopes of many have been cruelly dashed.

Ironically, changing the legal status of medicinal cannabis has actually made the situation worse. Prior to that change in legislation, the Home Secretary had the power to grant special licences to make medicinal cannabis available. The Home Secretary no longer has that power. Now supplies are conditional on both clinical sign-off and a funding agreement, and that is not happening. I know that the Minister and the Secretary of State want to resolve the problem. I also know that the Secretary of State has met some of the affected families and has promised to help them. But the clock is ticking. The End Our Pain campaigners are absolutely clear that this is a matter of life and death. It is now two months since the Secretary of State met the families and, in that time, not one single NHS prescription has been written for medicinal cannabis that contains both CBD and, crucially, THC. There are many good intentions, but the Department’s implementation procedures following the rescheduling of medicinal cannabis are not fit for purpose.

The Secretary of State has said repeatedly that he cannot overrule the judgment of clinicians, and of course we do not expect him to do so. We do, though, expect that he recognises that these are exceptional circumstances of great urgency and urgent special action is required. It is clear that the procedures are not working and we cannot rely on a “business as usual” approach. As my hon. Friend the Member for Manchester, Withington (Jeff Smith) said, we need a bespoke solution. We need an acknowledgement that cannabis is a special case. We need a broader analysis of the evidence for the efficacy of medicinal cannabis that brings together worldwide research with the experience of patients and families in the UK who have benefited from using medicinal cannabis. While NHS England investigates the causes of the blockages in the implementation process, the NHS needs to step in to meet the costs of private prescriptions.

We need improved education and support for medical practitioners with regard to medicinal cannabis. The current guidance for prescribing medicinal cannabis needs to be changed to support and protect prescribing clinicians who prescribe, following best practice, in the best interests of their patients. We need the Department of Health and Social Care and the NHS to stress that medicinal cannabis is legal and that there is an expectation that it will be prescribed in the same way as any other unlicensed medicine when appropriate. We need a guarantee on funding. We need to know that everyone right across these islands, wherever they live and whichever CCG governs the healthcare in their community, has access to funded products where appropriate. Good intentions on their own are not good enough: we need urgent action.

--- Later in debate ---

[Seema Kennedy]

I thank my hon. Friend. That is why, after the urgent question last month, the Secretary of State issued the process review. As I have said to my right hon. Friend the Member for Hemel Hempstead, that review will be reporting shortly.

We cannot be sure that cannabis-based products are safe or effective. There is a body of anecdotal evidence of therapeutic benefit, and the chief medical officer concluded that the evidence was sufficient to recommend that these products be considered for rescheduling from schedule 1 to schedule 2 under the Misuse of Drugs Regulations 2001, and that their medicinal benefits be further examined. All products in schedule 2 can be prescribed; cannabis-based products for medicinal use are no exception.

I want to talk quickly about the evidence base. Some people have talked about randomised controlled trials, which are what we normally use when there is anecdotal evidence. As hon. Members have said, parents are arbiters of this evidence. The normal procedure is that we do not base prescribing decisions on anecdotal evidence, which is why we have asked the NIHR to stimulate further research. We need to build up the existing evidence base, including through observational trials.

[Julie Cooper]

Does the Minister accept that these are not normal circumstances? These families and parents are absolutely desperate to access the medication that they have seen work for themselves. Can she find some way to circumvent the usual processes?

[Seema Kennedy]

I recognise the deep pain that families are going through, and I do take the point about the great frustration and desperation of the families. What I would say is that we have asked for more evidence, and we are working with everybody necessary to try to get this done as quickly as possible. NICE is internationally recognised for its robust and evidence-based evaluations and guidelines.

British Sign Language Users: Access to NHS Services

Julie Cooper Excerpts

Wednesday 15th May 2019 Westminster Hall

[Julie Cooper (Burnley) (Lab)]

Thank you, Ms Ryan, for your chairmanship of today’s important debate on an essential issue for our times. I thank my hon. Friend the Member for Newcastle upon Tyne North (Catherine McKinnell) for securing this debate and for her passionate speech and obvious commitment to acting on behalf of her own constituents and deaf people everywhere. She has inspired me to audit the provision in my constituency to see what I can do to make things easier for the deaf. I want to say how pleased I am to see Parliament facilitating sign language and subtitles here today. I spoke to the Minister ahead of the debate and we agreed that it would be wonderful if such provision could be made available in every debate in this place.

[Jim Fitzpatrick]

I alluded to the fact that a lot of progress has been made behind the scenes. The authorities are working very hard to see whether provision can be made, as it is in other Parliaments around the world. The Independent Parliamentary Standards Authority gives financial support for tuition for MPs who want to learn BSL, so perhaps we can make colleagues more aware that that facility is available also.

[Julie Cooper]

That information is helpful. I am sure that a number of Members would like to take advantage of that and learn more, and perhaps make a commitment to becoming signers.

As my hon. Friend the Member for Poplar and Limehouse (Jim Fitzpatrick) reminded us, two thirds of people with hearing loss have left their GP surgery feeling unclear about the health advice that has been provided. The scale of the problem is that there are 11 million people living with hearing loss. That is one in six of the population. The charity Action on Hearing Loss estimates that by 2035 15.6 million people will have some sort of impairment. It is time we took that seriously and focused our attention on solutions. It beggars belief that 40% of deaf people say that staff at their medical healthcare provider have called out their name to announce that it was their turn to be seen by a healthcare professional. It is hard to believe, but it happens all the time.

We have also heard about difficulty in making telephone applications. The Secretary of State is focusing on technology, and perhaps he might want to look at the request for an app to make emergency appointments for a deaf person. The Minister could advise him about it. Other issues include the fact that in trying to communicate on the telephone there is obviously no one to sign, and no opportunity to lip read. There can sometimes be difficulties with reading documents, because often when someone’s first language is sign language they fall behind with their reading level, which adds to the difficulties.

Those communication barriers mean that many people rely on friends and family members when navigating NHS services. We have heard about the challenges that someone experiencing hearing loss or deafness has in dealing with life in general, but none can be more important than those arising over health matters. When deaf people are forced to rely on family members, their independence is clearly compromised. Their confidence is undermined and their right to confidentiality is taken away. It is estimated that communication difficulties experienced by people with hearing loss cost the NHS an extra £76 million a year in additional, unnecessary GP visits. Those barriers may also deter some patients from seeking medical advice and attention, which could lead to their having more serious conditions and more expensive treatments—so the situation is not cost-effective, either.

Last year there was a BBC broadcast showing some distressing experiences of deaf people who were undergoing complex medical treatments for serious conditions, with no one to explain properly what was happening. The reporter concluded that deaf people were being left behind by the NHS and described a moving scene in which a patient undergoing complex investigations in connection with cancer treatment was absolutely terrified. There was no one there for them to talk to, although they felt extremely unwell and totally frightened. The hon. Member for Strangford (Jim Shannon) touched on that very point, which is a powerful one, about empathising—putting ourselves in the place of a deaf person and thinking what it might be like for them, given that such procedures can be frightening even when we are able to ask “What is that for?”, “How long will this go on?” and “What happens next?”

The issue could easily be addressed by the provision of trained interpreters with a full working knowledge of British Sign Language. BSL is a visual-gestural language that is the first or preferred language of many deaf people and has its own grammar and principles, which differ from English. The provision of British Sign Language interpreters would surely facilitate a kinder, more efficient, more cost-effective service. Members have mentioned that where such a service is provided it is done in a limited fashion. Someone who is in for five hours of medical treatment will be given an interpreter for only two; or the interpreter will not be there when they awaken after an anaesthetic. Clearly that is not good enough. My hon. Friend the Member for Poplar and Limehouse talked about the mental health issues that deaf people face disproportionately. Is it any wonder, given the isolation forced on them?

The whole issue relies on the recognition that for many deaf people sign language is their first language. English is often their second language, so providing a British Sign Language interpreter is as important as providing an interpreter for a speaker of a foreign language. Surely the Government must recognise that access to a BSL interpreter should be not an optional extra but a fundamental right. More than that, not only is the lack of qualified British Sign Language interpreters discriminatory; it is putting the health and, in some cases, the lives of deaf people at risk.

Those who suffer with deafness or hearing impairment have a legal right to support. Since August 2016 all organisations that provide NHS care and/or publicly funded adult social care have been legally required to follow the accessible information standard. The standard sets out a specific, consistent approach to identifying, recording, flagging, sharing and meeting the information and communication support needs of patients with a disability, impairment or sensory loss. In addition, the Equality Act 2010—landmark legislation introduced by the last Labour Government—made provision for equality in all public services and made a specific demand for service providers to make reasonable adjustment to avoid substantial disadvantage. Offering the services of an interpreter is cited as an example. The failure to provide support and British Sign Language interpreters is not just undesirable: it is a breach of the law.

We understand that the Minister who is responding to the debate cannot tackle all the issues on her own, but if she has been as moved as the rest of us by some of the speeches we have heard, we ask her to offer a lead. We want her to liaise with her colleagues in the Department for Education and the Department for Work and Pensions, and to talk to the Minister for Disabled People, Health and Work about taking the issue forward to ensure that the communication needs of all those who are deaf or who have some hearing loss are assessed and that, where necessary, a qualified BSL interpreter is always available.

Will the Minister demonstrate today that she understands the problem, which amounts to discrimination on the basis of disability? Will she listen, as I did, to the examples of good practice from Scotland, Finland, New Zealand and Hungary? If they can get it right, I am sure it is not beyond us to take some action.

Acquired Brain Injury

Julie Cooper Excerpts

Thursday 9th May 2019 Commons Chamber

[Julie Cooper (Burnley) (Lab)]

I thank all Members for their contributions to an excellent debate, as well as the Backbench Business Committee for selecting this important subject. I congratulate my hon. Friends the Members for Rhondda (Chris Bryant) and for Blaydon (Liz Twist), and the right hon. Member for South Holland and The Deepings (Sir John Hayes), who tabled the motion before us. In particular, I thank my hon. Friend the Member for Rhondda for his extensive work to raise awareness of acquired brain injury. I acknowledge the important work of Headway and the United Kingdom Acquired Brain Injury Forum, and I pay tribute to the excellent APPG for its sterling work to improve our understanding of the wide impact that ABI can have. Its comprehensive report, “Time for Change”, sets out a range of recommendations for the kind of support and rehabilitation that must be made available. I found that excellent report immensely interesting and informative, and I will now go on to champion awareness of acquired brain injury.

As the term suggests, acquired brain injury applies to injury caused to the brain after birth, and it can happen to anyone at any time. All Members have constituents who live with the consequences of ABI. A brain injury can happen in an instant, but its effects can be devastating and lead to lifelong challenges. The effects of ABI vary; those affected may suffer from headaches, dizziness, memory loss, extreme fatigue and depression, as well as diminished co-ordination and motor skills, irritability, and inability to concentrate. The right hon. Member for South Holland and The Deepings reminded us that we must be aware of the dynamic nature of the condition, and we heard about the wider impact of ABI when my hon. Friend the Member for Swansea East (Carolyn Harris) spoke about George’s experiences and the wide impact that ABI has across all walks of life.

Improvements in medical procedures and acute care have led to improved survival rates for those who acquire an injury to the brain. That is welcome, but it brings its own challenges and places further pressure on already overstretched health and social care services. Early and continued access to specialist rehabilitation has been shown to optimise the chances of recovery and to be extremely cost effective. As for many health conditions, however, the number of available beds across the UK is inadequate. Service provision is variable; consequently, long-term outcomes for brain injury survivors are compromised. As my hon. Friend the Member for Rhondda powerfully reminded us, this is all about quality of life, and it is cruel to save lives without the following support and rehabilitation.

Many Members spoke of the scale of the problem, and many people—including me before this debate—have little awareness of ABI, even though the numbers affected are so great. Currently, 1.3 million people in the UK live with ABI, which has rightly been described as the invisible epidemic. Some 900,000 people attend A and E with a traumatic brain injury every year, and every 90 seconds someone is admitted to hospital with an acquired brain injury.

It is estimated that 24% of children have some sort of brain injury, compared with 1% who have autism. ABI in children is often misdiagnosed as autism or attention deficit hyperactivity disorder. The point about misdiagnosis across the board was made effectively. A particularly good example was the misunderstanding of cases involving servicepeople. The combined cost of brain injury, including health and social care costs, disability support, lost work contributions and premature death, is estimated to be £15 billion a year, which equates to about 10% of the NHS budget. This is an issue of such seriousness and magnitude that it cannot and should not ignored.

In September 2018, the APPG report called for reform is all areas and Departments. This is not just a matter for the Department of Health and Social Care, although that would be a good starting point. As the report so rightly demonstrates, this should be an issue for the Department for Education, the Ministry of Justice and the Department for Work and Pensions, too. The report recommends change in several key areas. A national review of neuro-rehabilitation is required to ensure that service provision is adequate and consistent throughout the UK. We have heard Members describe current provision as a lottery. All affected individuals should be given a rehabilitation prescription, and there should be a significant increase in the number of neuro-rehabilitation beds. We heard about excellent trauma centres, but would it not be wonderful if an ABI consultation could be available in each of those units?

On education, Members expressed disappointment that the Timpson report made no mention of this issue. My hon. Friend the Member for Blaydon talked about small details, such as adjusting lighting or the colour of paper, that could be embedded in education. That would require all education professionals to have a minimum level of awareness and understanding about ABI and the educational requirements of children and young people with the condition. It is essential that special educational needs co-ordinators are given special training and that it is embedded in all SEN provision.

It was shocking to hear about the record of football in this country, and that, as a football nation, we have so little regard for sports-sustained concussion injuries. There is much work to be done in that area. Sport, Government and professional clinical bodies must work collaboratively to improve health professionals’ knowledge of concussion management.

Criminal justice procedures, practices and processes need to be reformed to take into account the needs of individuals with ABI. My hon. Friend the Member for Rhondda made the powerful point that ABI could be at the root of some crime and that, in the instances of female victims of domestic violence, we may be punishing victims. An assessment carried out ahead of imprisonment and sentencing would be useful in getting to the root cause of the problem, and would hopefully prevent further crime and further custodial sentences.

All benefits assessors in the DWP should be trained to understand the problems that affect individuals with an ABI. The story of Jordan Bell and his experience of filling in forms and the exasperation with the bureaucracy of the system was powerfully told. Those issues need to be addressed by the appropriate Department.

Much has been done to prevent ABI. The hon. Member for Ayr, Carrick and Cumnock (Bill Grant) talked about the benefits of seatbelts and airbags in reducing such damage. Comments were made about the considerable work of charities, but we cannot rely on charity to deliver on its own.

As this debate is being held under the aegis of the Department of Health and Social Care, may I ask the Minister, in the first instance, to focus on neuro-rehabilitation? NR can avoid or minimise disability and optimise recovery. Early access to NR is critical and there is substantial evidence that demonstrates NR is both clinically effective and cost-effective. Outcomes for those affected would be significantly enhanced if every individual was given an NR prescription that specified the individual’s specific needs and a care pathway. Will the Government ensure that every individual with an acquired brain injury gets just that? Will the Minister commit to introduce a neuro-rehabilitation consultant in every major trauma centre? The UK is facing a shortfall of 10,000 beds for neuro-rehabilitation services. Will the Minister commit to addressing that issue? Will she ensure that all health professionals in the community in primary care and secondary care are trained to recognise the symptoms of ABI?

We heard the powerful personal story from the hon. Member for Caithness, Sutherland and Easter Ross (Jamie Stone), which reminds us all about the impact on the families of ABI sufferers. So many people find themselves in a frightening situation. They need structured and planned support that is assured wherever they live. Significant mention has been made of the great work Headway does, but, as I have said, addressing ABI cannot be left to the work of charities.

Will the Minister commit to work with her colleagues across Government Departments to implement the recommendations in the APPG’s report on education, justice and welfare? As the debate has shown, there is support for action in all parts of the House. The report’s recommendations cannot be ignored, but must be regarded as the beginning of a journey. In the words of the all-party group, it really is time for change.

Oral Answers to Questions

Julie Cooper Excerpts

Tuesday 7th May 2019 Commons Chamber

[Seema Kennedy]

I thank my hon. Friend for his question. As he will know, my right hon. Friend the Secretary of State met Facebook last week.

On the issue of vaccination broadly, in 2017 we met the 95% rate for vaccination. Immunisation for everybody is absolutely crucial, but some children cannot be immunised because they are too young and others because they are immune-suppressed; so everybody who can be immunised should be immunised.

[Julie Cooper (Burnley) (Lab)]

I also welcome the hon. Lady to her place.

Close to 100 commonly prescribed medications are in seriously short supply, including painkillers, antibiotics and antidepressants. Worries about Brexit outcomes have led to the stockpiling of medications, which has undoubtedly exacerbated the problem, but I know from my own experience in community pharmacy that there have been concerns about the supply chain for several years, long before Brexit was ever dreamed of. The Government have, however, consistently turned a blind eye to these problems, which place additional pressures on GPs and pharmacists and are most certainly detrimental to patient care. Can the Minister assure me today that she understands the scale of the problem and outline the steps she is taking to resolve it?

[Seema Kennedy]

I thank the shadow Minister, my Lancashire neighbour, for her welcome. The Department takes this extremely seriously; we have a whole team working on it. There are about 12,500 prescribed medicines in this country, with only between 50 and 100 being looked at by the medicines supply team at any one time. There is no cause for complacency, though. In January this year, we took further steps to make it mandatory for pharmaceutical companies to report any supply issues to us as soon as possible.

NHS: North-West London

Julie Cooper Excerpts

Wednesday 24th April 2019 Westminster Hall

[Julie Cooper (Burnley) (Lab)]

It is a pleasure to serve under your chairmanship, Sir Christopher. I thank my hon. Friend the Member for Hammersmith (Andy Slaughter) for securing this debate. I know that he is a passionate advocate for the NHS in his area. Although I am pleased to respond on behalf of Labour, it is with sadness that hon. Members have to come here over and over to explain the impact on their constituents of the crisis in the NHS.

We have heard a mixed message of plans made and abandoned. It is a story of a shambles, and declining and reducing services, including the loss of services for children, maternity and stroke care. It is no secret that the NHS is under extreme pressure. After nearly a decade of stagnant investment, coupled with a recruitment crisis and a retention time-bomb, the cracks are really starting to show, as we have just heard. The King’s Fund notes that during the Labour Government, budget growth in the NHS was an average of 3.7% a year. It has dropped to an average of 1% a year during the Conservatives’ time in office. The recent announcements of additional funding are of course welcome. However, the British Medical Association and the King’s Fund acknowledge that the promised £20.5 billion, which equates to an increase of 3.4%, is simply not enough after nine years of severe underfunding. It is not even enough to wipe out hospital deficits.

Where is the funding to guarantee sustainable health services in the face of ever-increasing demand from a complex and changing demographic? Where is the funding to renew NHS infrastructure or outdated hospital equipment? Just repairing the dilapidated hospital buildings will cost in excess of £3 billion. We have heard from my hon. Friend the Member for Westminster North (Ms Buck) about the state of the buildings at St Mary’s Hospital and the urgent work that is needed. My hon. Friend the Member for Ealing, Southall (Mr Sharma) outlined the refurbishment work that is urgently needed.

Of course, it is not all about money. I was brought up to believe that you get what you pay for. It is clear that if we do not invest much, we will not get much. Is it any wonder that we have a staffing crisis in the NHS? The Conservative Government’s failure to provide adequate resource and support has created problems in both staff recruitment and retention. The Government continue to exploit the good will of dedicated NHS staff, many of whom are pushed to breaking point. As my hon. Friend the Member for Brentford and Isleworth (Ruth Cadbury) pointed out, staff morale is at an all-time low.

It is inconceivable that more and more hospitals should constantly face the threat of closure. I commend my hon. Friend the Member for Hammersmith and the committed grassroots campaigners for their extensive work over many years to save these vital hospitals. These victories are really welcome, but the Hammersmith and Fulham CCG faces cuts of £30 million. Is it not disgraceful to hear, in the light of that, that £72 million was wasted on private consultants? It is astonishingly incompetent, above all else.

Of course, the cuts to the CCG forced it to reduce urgent care, local GP hours and access to primary care, which is short-sighted as it causes suffering for constituents and often leads to more expensive or hospital treatments. It seems that the Health Secretary’s only answer is to focus on technology. I agree that technology has a role to play in the future delivery of NHS services, but we must proceed with caution. Patients’ needs are paramount, and we must ensure that their safety is never compromised.

I share my hon. Friend’s concern about the use of online GPs. It is clear that the app providing access to such services, GP at Hand, will be very convenient for some people, and is likely to appeal to younger patients. Indeed, Ipsos MORI found that 87% of all GP at Hand patients are aged between 20 and 39. It is also likely that online GPs will prove attractive to patients with less complex medical needs, leaving the providers open to the accusation of cherry-picking. They are undoubtedly delivering a service for which there is demand, but the fact remains that many patients need to attend a traditional GP consultation.

Of course, many patients do not know when they register with an online GP that they are deregistered from their GP surgery. That has serious consequences for the financial viability of the traditional surgery. Hammersmith and Fulham CCG has paid £10 million to GP at Hand. That money is no longer paid to local surgeries, which are as busy as ever catering for patients with multiple complex needs, and their overheads are still as great as they ever were. It is imperative that the funding model for the delivery of GP services is adjusted to reflect the fact—

[Sir Christopher Chope (in the Chair)]

Order. I have interrupted the hon. Lady, because we must hear from the Minister and time is very limited.

[Julie Cooper]

I will sum up, Sir Christopher.

Patients are suffering. We want assurances from the Minister about future hospital closures, sustainable funding and the role of technology in the modern NHS. We want to know the direction of travel of the NHS in north-west London and the country as a whole.

Infant First Aid Training for Parents

Julie Cooper Excerpts

Wednesday 3rd April 2019 Westminster Hall

[Julie Cooper (Burnley) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Hollobone. I congratulate the hon. Member for Truro and Falmouth (Sarah Newton) on securing this important debate. The subject has had a lot of attention in the news recently, but not much attention in this place. Having listened to the speeches and talked to colleagues across the House, I do not think there will be much disagreement here today. The fact that there are not many Members here says more about the subject than it does about any other business in this House, important as it is: any Member seeing the title of this debate might say, “It’s a no-brainer. What is there to talk about? Of course it is something we support.” It is important to put these things on the record.

Members have talked about their personal experiences as parents and grandparents—I am sure we all want to congratulate the hon. Member for Moray (Douglas Ross) on the new addition to his family. People have spoken movingly about their own children and grandchildren. As a parent and a grandparent—I am going to be a grandparent again next week—I am reminded of how important the subject is, and we ought to give proper consideration to it. This debate gives us that opportunity, so I am grateful to the hon. Lady for securing it.

[John Howell]

As the hon. Lady rightly says, a lot of people have spoken from personal experience, but we as MPs have a role far beyond that—we are champions in our own constituencies. Does she not think that we should take the lessons learned and go out and make these points very forcefully in our constituencies?

[Julie Cooper]

I am grateful to the hon. Gentleman for that important intervention. I shall certainly speak with a loud voice about the subject in my constituency, and I encourage all Members to do the same.

The other point made by the hon. Member for Moray was that access is not easy. In preparation for this debate I checked up on access to training courses for my constituents and found that, even though I represent an urban community, it involves a 60-mile drive or a long train journey on a slow, rickety train line. That presents a massive barrier to my constituents accessing such training. I totally take the point that the hon. Gentleman makes, and I agree with him entirely.

The safety of our children is and always should be paramount, and it is therefore important that, in the event of an obvious health emergency, parents have at least a basic knowledge of first aid so that they can take action before professional help arrives—actions that might save the child’s life. The hon. Member for Truro and Falmouth made a strong point about how it is important that parents are trained to recognise the symptoms of what can be serious diseases, such as sepsis and meningitis. It would be useful if parents were equipped to recognise the symptoms before they decide whether to call 999 or take their child to hospital, because knowing how to spot the symptoms really does save lives.

First aid, as the term suggests, is the first medical attention that a person receives after an accident or during a medical emergency. Despite what many people have been led to believe, first aid does not have to be delivered by medical professionals—we have established that. A person’s chances of surviving a medical emergency are increased dramatically if a member of the community can respond with first aid immediately. What happens in the crucial minutes after someone dials 999 or the NHS’s 111 and before professional help arrives can be the difference between life and death. The British Red Cross reported that close to a quarter of infant deaths could have been prevented had there been a qualified first aider on hand, and who better to be trained than the parent?

[Dr Caroline Johnson]

A few weeks ago I was walking to a parliamentary event across the square, and I came across a man who was unconscious and not very well. When I called 999 for an ambulance, I noticed that the ambulance operators who answer the phone provide detailed and step-by-step advice to callers about what to do. That is a beneficial thing to note.

[Julie Cooper]

That is an important point. I have been on the receiving end of that with a family member, waiting for an ambulance and listening to instructions. Nevertheless, I appreciate that having the confidence to follow those instructions, particularly with a young child, might go a little beyond that.

This is about re-teaching people about what they think they know. There is a lot of so-called knowledge out there among people who think they know first aid, but that is often based on what they have seen in the media, which sometimes puts style before substance. In fact, procedures shown for dramatic effect often bear little resemblance to safe first aid. Furthermore, carrying out procedures without proper training might do more harm than good. First aid for babies is also vastly different from first aid for adults and other young children. Such important matters should be regarded as key parenting skills.

All parents, irrespective of their ability to pay, should have access to high-quality first aid training as a priority. Access to first aid training is about more than skills; it is also about building confidence and resilience. The British Red Cross surveyed a group of people it had trained in first aid, and asked whether they felt the training had contributed to their personal wellbeing. Three quarters of the respondents said it had made them more capable and more reliable in an emergency, and half said it had made them more determined and better at finding their way out of difficult situations.

Ahead of this debate, the British Red Cross shared with me the case of Leanne, a young mum from Swindon. When her baby, Maia, was six months old, Leanne took a baby first aid course with the British Red Cross. When Maia was 18 months old, she had a febrile seizure. Using knowledge from her first aid course, Leanne was able to save Maia’s life by instantly recognising the signs, taking steps to cool her down by removing her blanket, and placing her on the floor so that she did not injure herself during the seizure. After the seizure was over, Leanne further reduced Maia’s temperature by stripping her down to her vest, and she placed her in the infant recovery position. Leanne’s quick thinking saved Maia’s life before the paramedics arrived, and Maia is back to her playful, happy self. Leanne was able to do that only because she recognised the signs of a febrile seizure from her baby and child first aid course.

A seizure can be a terrifying and violent event for a parent to witness, especially when they do not understand what is happening. Febrile seizures are not unusual in babies and children between the ages of six months and three years. However, the Red Cross reports that, when questioned, 66% of parents had not been taught to recognise a febrile seizure, and 65% did not even know what one was. The baby and first aid course gave Leanne the knowledge and skills to act, but most importantly it also gave her the confidence. She said:

“I’m grateful that I had attended a baby and child first aid course which meant I knew what to look out for and how to deal with a febrile seizure.”

Because of her first aid knowledge, she felt calm and able to act for her daughter.

We have heard many examples of such events, and we are grateful to the hon. Member for Sleaford and North Hykeham (Dr Johnson) for sharing her expertise. People in the wider public often talk about MPs living in a bubble or ivory tower, but the hon. Lady’s expert and practical knowledge demonstrates yet again that Members of Parliament are in touch and know what is happening out there. As the hon. Member for Henley (John Howell) said, it is right and proper to use our position to spread that knowledge and champion causes such as this.

In 2014, Mumsnet sponsored 20 mums to take part in British Red Cross baby and infant first aid training. All the mums rated the training highly, and one said:

“I really enjoyed the course as every single thing discussed could easily relate to me and my children. All the videos of real-life scenarios really brought it home how easily these things could happen, but now I feel confident and that I could make a real difference to the outcome, and would feel so much more knowledgeable on what to do in an emergency situation.”

As we have heard, there are many different providers of first aid training for parents of infants. I specifically mentioned the British Red Cross, and other hon. Members have mentioned St John Ambulance, which offers first aid courses designed specifically for babies and children. There are also local providers, such as the one championed by the hon. Member for Truro and Falmouth. In addition, the NHS provides an online app to support parents with first aid for their infants. One parent said:

“Although you could read everything on the app and watch the videos for free, I think doing it in a class environment really makes you take it all in. It will also make you feel more confident if you were ever to need to help someone or your own child.”

As the Secretary of State for Health and Social Care often reminds us, technology in the NHS is helpful, but it is not a substitute for services delivered by real people. In terms of first aid provision for parents, such apps can be useful to reinforce training given in a class setting, but they should not be seen as a substitute.

[Dr Caroline Johnson]

The hon. Lady is generous in giving way. Does she agree that both technology and face-to-face contact have their benefits and can be combined? A “sim” dolly is an electronic version of a resuscitation dolly, and when supervised resuscitation is provided to a baby, it provides electronic feedback on whether compressions are deep or fast enough, as that can be measured electronically by the dummy itself.

[Julie Cooper]

I am grateful to the hon. Lady for her expertise in that technology, and such things can be used in combination with a class setting and training to support existing knowledge. I agree that, on specific occasions, such technology has an important role.

In terms of treatment, we lack consistency of provision and access. We have already spoken about distances to, and charges for, courses being a barrier for some parents. Shockingly, research by the Red Cross showed that 95% of parents did not know what to do when shown three examples of life-threatening medical emergencies. Surely it is time to ensure that training is available for every parent in every region. I take the point that we ought not to be prescriptive, but in leaving things to local providers, we must ensure that no one falls through the gaps and no parent is missed.

The Royal College of Paediatrics and Child Health has warned that UK infant mortality levels are among the highest in the developed world. There are many reasons for that, but cuts to local child services, community health projects, and community midwives and health visitors have undoubtedly not helped. It is clearly desirable to ensure that this important provision is adequately funded, but a significant proportion of deaths could be prevented by ensuring that all parents are equipped with important first aid skills.

Of course, a parent first aider is no replacement for a health visitor or paramedic, but they can be the first line of defence when it comes to helping their children live longer and healthier lives. Informed parents can prevent unnecessary trips to the GP and inappropriate hospital admissions, and it is a shame that despite the support that community and parent first aiders provide to the NHS and families, they are barely mentioned in the NHS long-term plan. That is important because if the Secretary of State is serious about making the NHS the best health service in the world, and about having an NHS that promotes health and wellbeing through a focus on prevention, the Government must make first aid in the community a priority. Equipping parents to look after their infants is a good and important step.

Will the Minister take action to ensure that universal first aid training forms part of the antenatal care available to parents? This is about providing families and communities with the skills to step forward in an emergency so that tragedies can be avoided. Learning such skills can be the difference between a life saved and a life lost.

[The Parliamentary Under-Secretary of State for Health and Social Care (Jackie Doyle-Price)]

I join all colleagues in thanking my hon. Friend the Member for Truro and Falmouth (Sarah Newton) for bringing this important subject forward for debate. She has brought to it her characteristic good sense and made her case extremely well. I join colleagues in paying tribute to her work as a Minister. I must say that I had to work with her regularly when she was Minister for Disabled People and I miss her terribly, but if today is anything to go by, I am sure she will keep me busy from her position on the Back Benches, and I thank her for that.

I thank all hon. Members who have participated today, particularly my hon. Friend the Member for Moray (Douglas Ross), who brought his perspective as a new parent. If he will forgive my saying so, as he was articulating some of the things he learned, it brought home to me how new parents can be a bit like rabbits caught in headlights, thinking, “Oh my goodness, I’ve got this fragile thing, what am I to do?” Again, that brings home the need for parents to feel confident in looking after their newborns.

My hon. Friend the Member for Sleaford and North Hykeham (Dr Johnson) gave a forensic exposition of the risks children face, and reminded us that we are equipping people with good, common-sense practical skills for things that can happen to anybody. She made her arguments extremely well. It is always a pleasure to listen to the hon. Member for Glasgow East (David Linden); again, he brought the subject to life beautifully with his own experience and spoke excellent common sense.

I am surprised to hear that the hon. Member for Burnley (Julie Cooper) is a grandmother, but that probably explains why she speaks from such a well-informed perspective. I am glad that she shared Leanne’s story, because it was a perfect example of how going through a course made that parent feel confident about how to deal with a child in distress, and helped her to understand exactly what the condition in front of her was.

Faced with such evidence, we can only do more to spread the news to parents that it is a good idea to equip themselves with first aid skills. From an NHS perspective, as the hon. Lady mentioned, if parents know more about their children’s conditions, there will be fewer visits to A&E and fewer visits to GPs, and that will make the NHS more effective. In a sense, what is not to like?

There are many providers of such products in the market. We have heard about St John Ambulance, the Red Cross and other local providers, and I would not want to favour one or other of them, beyond highlighting that those courses are available, as well as material on the NHS app. I hear what the hon. Lady says—that that is no substitute—but I tend to see these things as complementary. Today’s new parents are of the smartphone generation and want to access material via apps, and we must ensure that we have a good spread of information available to parents.

The death of any child is a tragedy, and the more we can do to support people to be the best possible parents, the better, because it is vital to the longer-term outcomes for the health and life chances of their children. I know my hon. Friend the Member for Truro and Falmouth brought her experience from her campaign to raise awareness of sepsis, which she referred to in her speech. Sepsis is a silent killer, and probably one of the most preventable causes of death, if we can identify it quickly enough. It is important that we continue to raise awareness so that people, and particularly parents, can spot the signs of sepsis and make decisions and interventions that will help sufferers.

Reference has been made to where we have these interventions and who can give new parents advice on first aid. I see midwives and health visitors as being on the frontline of doing that. My hon. Friend the Member for Moray explained that antenatal period when we are building a relationship and lapping up the information. The trust parents have in midwives and health visitors is a special relationship and presents a powerful opportunity for us to make an intervention to improve health outcomes for all. I see them as the cornerstone of ensuring that parents have the knowledge and skills they need before, during and after their baby’s birth, and that they have access to all the information they need.

There is information on the NHS website with tips for new parents, including information on the signs of a serious illness in a baby or toddler, but it is important that health visitors talk through common conditions with parents. It is a question of confidence; it is about making parents feel confident that they know what is happening to their child and that they can do their best to help them.

That was brought home by the account my hon. Friend the Member for Truro and Falmouth gave of Rowena’s story and the fact that Rowena felt able to take someone’s child and help them because she had had that grounding. Such things can obviously go the other way, and none of us wants to be in the position of thinking, “What if?” or, “If only”. There is clearly every reason to encourage as widespread training in first aid as is possible.

My hon. Friend has a simple ask: she wishes the Government to fund a pilot project to generate evidence for a further roll-out of the project she has witnessed locally in Cornwall. The National Institute for Health Research welcomes funding applications for research into any aspect of human health, and any application will of course be judged in the normal way. Awards are made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality, so I encourage her and the team she is working with to apply for such a grant so that we can, as she says, demonstrate that the training has an impact on outcomes and provides better value for money for the NHS. It seems to me to speak for itself, but I encourage her to go through that process.

[Julie Cooper]

Can the Minister assure us that, if funding is achieved for such a pilot and the training is shown to be beneficial, the Government will commit to universal provision?

[Jackie Doyle-Price]

That will come down to the evidence base. The hon. Lady raised some questions about prevention in her speech. Following the long-term plan, we are working up our wider proposals for prevention, and we see interventions in the early years and childhood as extremely important, so we will look at what measures we need to take in that context. At this stage, I am not able to commit to universal provision of a particular product, but we need to look at how we can best equip parents with the tools to look after their children as well as they possibly can.

Every parent wants their child to stay safe. Frankly, my hon. Friend the Member for Sleaford and North Hykeham scared me to death with the risks she highlighted, because they illustrate just how easily any one of us could fall victim to an accident, and for a child that is especially the case. We know that unintentional injuries are one of the main causes of premature death and illness for children in England. To put a figure on that, every year in England 55 children under the age of five die from injuries in and around the home, which is 7% of all deaths of children aged one to four. That is pretty stark. We can factor on to that the 370,000 visits to A&E departments and 40,000 emergency hospital admissions in England each year because of accidents at home among under-fives.

Preventing accidents is part of Public Health England’s priority of giving children and young people the best start in life, and is an area to focus on. I was struck by the reference to choking, because that is a situation where knowing what we are doing can be the difference between life and death; by the time an ambulance has been called, it will be too late. There is much more that we need to do to educate people on how to deal with a child who is choking, because it is something that can happen to any child. We have all seen children excited and gobbling their food down, and with that obviously comes the attendant risk.

As I mentioned, health visitors are accessible to all parents and provide a trusted source of knowledge, advice and information. I want to make sure that we take full advantage of health visitors in that space. Through our work on early years, we are looking at what more we can do to support them, to make the most of that intervention. I am confident that if we make better use of that workforce, we can take a lot of action in this area, not least because parents find engaging with their health visitor less intimidating than they perhaps find medical professionals or anyone else; it is a relationship built up in the home. Health visitors are also the part of the scheme that deals not only with mum but with dad and the rest of the family as well, which is so important. Health visitors lead and support the delivery of preventive programmes for infants and children from nought to five years old through the healthy child programme, including by giving regular advice on accident prevention and links to wider community resources.

[Julie Cooper]

Does that mean that the Minister is committed to restoring the number of health visitors?

[Jackie Doyle-Price]

The hon. Lady will be aware that there has been a fall in the number of health visitors, following a peak in 2015. I am extremely committed to making sure that we have an ample supply of health visitors, because they are on the frontline of early intervention; they are an army. She will know that the NHS long-term plan, recognising that local authorities have borne the brunt of fiscal discipline in this area, explicitly says that we will strengthen the relationship between the NHS and local authorities in this space, because that is clearly good for health outcomes. I hope that that reassures the hon. Lady.

I could go on for much longer, Mr Hollobone, but I do not want to stretch your indulgence unduly. I thank my hon. Friend the Member for Truro and Falmouth for all her work on this matter and on raising awareness of sepsis. We will continue to co-operate in this area. I can tell her that Public Health England very much has this area on its radar, in terms of giving advice to parents on how best to look after their children. We will continue to work with the Royal College of Paediatrics and Child Health to establish a single, England-wide paediatric early warning system to improve the recognition and response of healthcare services to deteriorating children or young people across England in primary and community care, including in the ambulance service and hospitals. Information and advice to help parents recognise and respond to signs and symptoms of ill health are freely available.

We must continue to champion and promote this cause. I thank midwives and health visitors for their tremendous work—they play such an important role in this—as well as providers of first aid courses. I look forward to engaging with my hon. Friend further on this matter.

Healthcare (International Arrangements) Bill (Changed to Healthcare (European Economic Area and Switzerland Arrangements) Bill)

Julie Cooper Excerpts

Ping Pong: House of Commons
Tuesday 26th March 2019 Commons Chamber

[Stephen Hammond]

Given that I just said that we have accepted the amendment that would remove the powers, that argument is hardly powerful. I also suspect that the Opposition spokesperson and the other members of the Committee will be surprised to hear that they had not fulfilled their role when they sat through the hours of scrutiny in Committee.

In conclusion, I offer my thanks to hon. Members from across the House and to the Lords for its constructive work in scrutinising and improving this Bill. We share a common goal in wanting to ensure that we can continue to benefit from the current reciprocal healthcare schemes and benefit from similar arrangements in the future. This Bill is an important and necessary piece of legislation that seeks to ensure that the Government are ready and able to respond to different EU-exit scenarios and that we are in a position to support, as appropriate, people who rely on current EU reciprocal healthcare arrangements. For that reason, it is critical that we take those steps and that the Bill can become law.

[Julie Cooper (Burnley) (Lab)]

I rise to support the Lords amendments before us. I thank all the Members who have worked on the Bill at various stages and the staff of the House, who have provided invaluable support. I also put on record my particular thanks to my hon. Friend the Member for Ellesmere Port and Neston (Justin Madders) for his great work during the Bill’s earlier stages. I also thank those in the lords for their exceptional work on this Bill. Thanks to their endeavours, we now have a Bill that is fit for purpose. I am pleased that the Government have decided to listen to our noble friends and give full support to the amended Bill, which marks a welcome, if rather belated, climbdown by the Government.

As we prepare to leave the European Union, it is vital that the Government are able to respond to the widest range of possible EU-exit outcomes in relation to reciprocal healthcare. So many people are reliant on the continuation of reciprocal arrangements and the Government are quite right to seek to secure such arrangements as we leave the EU. The Opposition have supported the principle of this Bill from the outset. but our concerns have been around the scope and the wide-ranging powers that were originally proposed. We were not happy to give the Government a blank cheque to enter into any number of health agreements, with anyone anywhere in world, with no requirement to report back to Parliament, and with little or no opportunity for parliamentary scrutiny. These amendments have addressed our concerns, and I again thank those in the lords for their work.

Turning to amendments 1, 2, 8, 10 and 18 to 20, I want to stress to the House the scale of the issue before us, as pointed out by my hon. Friend the Member for Huddersfield (Mr Sheerman), who is no longer in his seat. Under the existing arrangements, 190,000 UK state pensioners and their dependants who live abroad, principally in Ireland, Spain, France and Cyprus, enjoy the benefits of reciprocal health agreements. The current arrangements also provide full access through the EHIC to healthcare and emergency treatment for UK residents who visit the EU on holiday, to study or to work. The same protections are extended on a reciprocal basis to EU nationals who reside in the UK or who seek to visit. For the sake of those people, I am glad that the Government have come to their senses. These arrangements, which give full peace of mind for healthcare, must be protected.

I remind the House of the evidence given by representatives of Kidney Care UK. We heard that 29,000 people in the UK are dependent on dialysis, which involves three five-hour sessions per week to ensure survival. Under the current arrangements, if those people choose to holiday in the EU, they can easily pre-book slots for dialysis, with Kidney Care UK saying that that

“means that people are able to go away with the confidence that they will be able to be supported and receive the treatment they need.”––[Official Report, Healthcare (International Arrangements) Public Bill Committee, 27 November 2018; c. 12, Q39.]

That also means that they and their families are able to get a much-needed break. Kidney Care UK also made the point that

“it is easier to go away for two weeks in Europe and take a break in that way than it is to get two weeks in a UK unit”––[Official Report, Healthcare (International Arrangements) Public Bill Committee, 27 November 2018; c. 14, Q43.]

Perhaps there is a learning point for us there.

Based on that evidence, the Minister concluded at the time that without a continuation of these arrangements it would be more or less impossible for sufferers of kidney disease to travel. I totally agree, and I am delighted that the Government appreciate the urgency of the situation in which we find ourselves and are giving their full support to this amended Bill. That is important because we may yet leave the EU with no deal, and there will be many British citizens listening nervously to this debate because they have already booked holidays—some of them will be departing at the weekend or in the coming weeks. However, they can now be reassured that the legislation will pass without further delay.

I reassure Baroness Chisholm that the main Opposition priority is always to ensure that those who need care get it. Further to that, we are right in the first instance to protect the rights that UK citizens already enjoy. In short, we must protect our rights to reciprocal healthcare in Europe before we seek to acquire global healthcare provision. Similarly, those UK citizens who have retired to the EU will be relieved to know that treatment for chronic health conditions and ongoing health support will continue to be provided for them, as it is now, without interruption.

If that was not the case because the Bill was unable to receive Royal Assent in a timely fashion, there would have been much understandable consternation and anger among UK citizens currently residing in the EU. A significant proportion of these citizens are pensioners, and they would have been personally liable for healthcare costs after exit day unless a new agreement with the EU or new bilateral agreements with member states were in place. We must also consider the fact that if there is an interruption in provision, many British expats would have no alternative but to return to the UK, which would of course add to the pressures on our already overstretched NHS.

At every stage, both here and in the other place, concerns have been raised about what those in the lords described as the breathtaking powers sought in this Bill. Lords amendments 3 to 7 serve in part to restrict the powers to those that are clearly defined and to those that are necessary for the purpose of protecting reciprocal health arrangements. In amendment 3, just removing the words “for example” assists in terms of essential accountability issues by restricting the powers of the Secretary of State to those regulations specifically listed. The powers listed remain extensive, and the lords was assured that they give the Government everything they need to take forward the negotiations on reciprocal healthcare. We welcome amendments 5 and 6, which ensure that the power to deliver functions is conferred only to a public authority. We are happy that the powers conferred by clause 2 should also be subject to a five-year sunset clause.

We support amendment 11, which provides an important and necessary requirement to consult with the devolved authorities, namely the Scottish Parliament, the Welsh Assembly and the Northern Ireland Assembly. We fully support the vital role that the devolved Administrations play in delivering reciprocal healthcare arrangements, and we welcome the memorandum of understanding that has already been achieved.

Amendment 12, which requires the Secretary of State to report on repayments made under this Bill, is also welcome. This amendment reasonably calls for annual reports to be published after the end of each financial year as soon as is reasonably practicable. It is anticipated that these reports will include details of both expenditure and income. This will facilitate transparency on the Government’s use of public money. I am especially pleased that the Minister has withdrawn his former opposition to that procedure.

On a wider point, in connection with repayments, it is important that we do not overlook the fact that many hospital trusts are struggling to recoup moneys owed under current EU arrangements. Indeed, some costs are never recovered. The UK recovers less than £50 million a year for the cost of treating European patients, while paying £675 million for the care of Britons in Europe.

[Mr Philip Dunne (Ludlow) (Con)]

The hon. Lady is pointing out the disparity in payments between the UK and the EU. Recognising that there are considerably more EU users of the NHS than UK users of health services on the continent, why is it that the Labour party, in the past, criticised the NHS and the Department of Health and Social Care for trying to recover sums due from EU citizens for taking advantage of our health service?

[Julie Cooper]

I think the objections raised by the Labour party in the past were based on the methodology used and the potential abuse of personal data, but we would fully support an efficient system to recover moneys owed to the UK.

[Dr Philippa Whitford (Central Ayrshire) (SNP)]

When talking about the disparity in numbers—there are more than 3 million European citizens here and approximately 1.5 million UK citizens there—is it not the case that the majority of EU citizens here are working and paying taxes and therefore are not covered by this system but are covered by the tax they already pay?

[Julie Cooper]

The hon. Lady makes an important point. I was referring to the fact identified by the Public Accounts Committee in its concerns about collecting what is due, but I take her point that many people pay for their own health provision while in the UK.

My point further reinforces the rationale of restricting the scope of this Bill to the EEA and Switzerland, which will help to ensure the priority is to improve the recovery of healthcare costs, where they are due, before we even begin to think of entering into non-EEA agreements.

We, of course, welcome the Government’s decision to remove the Henry VIII powers from this Bill. We repeatedly return to that issue in this raft of Brexit legislation, and I hope now, and certainly in connection with this Bill, that the Government agree it can never be right to confer on any Minister the same powers as are conferred on Parliament.

I understand that the Minister has a big vision and wants to take this opportunity to extend the current arrangements and to present a Bill that allows the Government to enter into any number of new reciprocal health agreements with any and every nation of the world, should they so choose. There could be a time and a place for such legislation, but it is not now because time is so short. There is not time for Parliament to scrutinise such an extensive range of proposals properly for such wide-ranging powers.

Our noble Friends raised some very reasonable concerns on that point, and they are correct to note the comments of the Delegated Powers and Regulatory Reform Committee when it concluded that the Bill, in its original form, gave law-making powers that were too wide. Our noble Friends were right to give serious consideration to the Constitution Committee’s recommendation that the scope of the Bill should be limited to countries that participate in the existing EHIC scheme:

“While the exceptional circumstances of the UK’s departure from the European Union might justify legislation containing broader powers than would otherwise be constitutionally acceptable, this does not extend to giving effect to new policy unrelated to Brexit.”

Above all, we now have a Bill that does what was intended: to ensure the continuation of the current reciprocal healthcare arrangements with the nations of the EU and the EEA. Given that that is the Bill’s principal target, there is no need to give the Bill worldwide scope.

I am pleased to join the Minister in giving our full support to the amended Bill before us.

[Kevin Foster]

It is a pleasure to be called to speak in this debate. I do not intend to detain the House long with my observations. I enjoyed the Minister’s introduction.

I welcome the Lords amendments, particularly the ones that change the thrust of the Bill to the EEA and Switzerland, but I hope that right hon. and hon. Members will bear in mind that, in the long run, the goal of having reciprocal healthcare arrangements with other nations is not a negative one in itself. I was disappointed yet again to hear from the right hon. Member for Carshalton and Wallington (Tom Brake) that this is all about opening up the NHS to the US health giants—it is not. It is about having reciprocal arrangements for visitors to other countries, including those on business and those who are travelling.

[Julie Cooper]

I made the point that, in future, there may be a place for such arrangements, but does the hon. Gentleman accept that time is so short, given the urgency of getting something in place to secure arrangements, that now is not the time for that?

[Kevin Foster]

I meant it more as a comment. I accept the Lords amendments. To be blunt, given the pressure of time and the need to get the Bill on the statute book to give people certainty about their healthcare arrangements, if these amendments achieve consensus with Opposition Front Benchers and the other place, I am more than happy to support them.

In relation to the remarks of the right hon. Member for Carshalton and Wallington, who sadly has not stayed for the rest of the debate, this is about making sure that people who go to hospital to access emergency care are not suddenly faced with a bill for the full cost as if they were completely uninsured.

We have arrangements with Australia and New Zealand that are not at the same level as we have with other EU countries, but they could potentially be developed. I do not want to see that aspiration lost, because we want our young people to have the opportunity to travel and work abroad where appropriate. In many countries, as the hon. Member for Central Ayrshire (Dr Whitford) rightly said, people who work will start earning rights under that country’s social insurance system, which would trump the Bill.

Oral Answers to Questions

Julie Cooper Excerpts

Tuesday 26th March 2019 Commons Chamber

[Caroline Dinenage]

Almost 90% of prescription items dispensed in the community in England are free of charge. That includes medicines for the treatment of asthma. The fact is that people who, like me, suffer from asthma and need those prescriptions have to decide, as taxpayers—as the people funding our NHS—whether we would rather contribute to those prescriptions or see the underfunding we have seen in Scotland, where GPs have been underfunded by almost £660 million over the last four years. It is a case of priorities.

[Julie Cooper (Burnley) (Lab)]

I miss the former Minister, the hon. Member for Winchester (Steve Brine), but commend him for his principled stance.

The Minister is missing the point on prescription charges. It is now more than 50 years since the eligibility criteria for medical exemption charges were reviewed, and next week prescription charges will rise again, placing a financial burden on many who require regular medication for long-term conditions. Does she agree that it is high time the Government moved to address the very many anomalies in the system? How can it be fair that patients with some chronic illnesses get free prescriptions for all their ailments, while asthma sufferers pay for everything? When will she review this unfair system?

[Caroline Dinenage]

We all miss my hon. Friend the Member for Winchester (Steve Brine), so I thank the hon. Lady for her comments.

Since prescription charges were introduced, Governments of all colours have decided that some patients should pay prescription charges to contribute to the cost of running the NHS, but almost 90% of prescription items are dispensed in the community free of charge, which I think the hon. Lady will agree is an enormous amount.

Leaving the EU: Health and Social Care

Julie Cooper Excerpts

Tuesday 19th March 2019 Westminster Hall

[Julie Cooper (Burnley) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Bone. I am grateful to the hon. Member for Argyll and Bute (Brendan O’Hara) for bringing this time-sensitive subject to the Chamber for debate. It is my pleasure to speak on what must be the most important subject of the day.

It is true that in June 2016, the majority of people in the UK voted to leave the EU. However, they did not vote for a worsening of health and social care provision, for reduced access to medicines or for fewer nurses, doctors and care workers. They did not vote to damage medical research or to leave vulnerable people without social care. It is therefore important that we turn to some of the specifics and seek reassurance on behalf of the British people.

The question of medicines has been much talked about, not least this week in this place. Coming from a pharmaceutical background, I am extremely worried about the Government’s complacency. This is not about scaremongering; it is about listening to the real concerns of patients, patient groups and medical professions. Contrary to the comments made by the hon. Member for Henley (John Howell), it is not only helpful but vital for those groups to raise their serious concerns. I agree with the Minister that not only is it not Government advice to stockpile medication, but it is dangerous for patients to do so. One can understand why they might be driven to do so, however; it is an indication of the Government’s failure to provide reassurance on that point.

Medication forms an important part of NHS care. Each year, 1 billion prescriptions are dispensed by community pharmacies. For patients with long-term conditions, such as diabetes, asthma, epilepsy and many more, daily medication is an essential part of staying well. Whether we are talking about medication to treat cancer or heart disease, medication for the management of high blood pressure or the occasional prescription for antibiotics, we take it for granted that the medication that we need will be available when we need it.

The pharmaceutical industry is, by definition, an international business. Key ingredients are often manufactured in India and the far east, and transported to specialist manufacturing plants. Many of the plants that supply the UK are located elsewhere in Europe, and the finished products have to be imported into the UK and distributed to hospitals and pharmacies for use with patients. The entire process has to be carefully managed to ensure that everything happens in a timely way. That is particularly true for medicines with short shelf lives, such as the lifesaving EpiPens needed by those with severe allergies. It is also true for medicines with special storage requirements, such as insulin, which has to be kept refrigerated.

[Patricia Gibson]

A number of us are deeply concerned that because some people in this place are enthusiastic about Brexit, they are wilfully blind to some of the challenges that the hon. Lady is talking about. Does she agree?

[Julie Cooper]

I absolutely agree. We cannot dismiss concerns just because we do not like their implications; it would be irresponsible to do so. Delivery into the UK is currently a just-in-time service for the pharmaceutical industry, for many of the reasons I have mentioned. It is true that in the long term, there is some manufacturing capacity in the UK and we could change the way we get our supplies, but that is not going to happen overnight. It would take a considerable amount of time, given the stringent safety requirements involved in the manufacture of safe medicines, for us to be able to do that.

I am not convinced that we have sufficient supplies or that sufficient steps are in place to ensure an uninterrupted supply. People, including those who rely on insulin, are legitimately worried. Breast cancer care organisations have raised the issue of access to radioactive isotopes needed in the vital treatment of breast cancer. It would be irresponsible of them not to raise that. It is extremely worrying, given that we have only 10 days until the UK leaves the EU, that there are still no arrangements in place. There is no doubt that the UK will need time to establish new supply chains, which is perfectly possible. It is not scaremongering. [Interruption.] I thank the Minister for the comments he has just made from a sedentary position, but we are not convinced. It we were to leave without a deal, the effects would be catastrophic.

[Alison Thewliss]

The hon. Lady is absolutely right that we should be worried. Just last night, the Government made changes to the human medicines regulations to bring in a serious shortage protocol, under which Ministers would be able to add medicines to a list and designate a shortage. In practice, it will mean that pharmacists can replace prescribed drugs with others at the pharmacy if there is a shortage. Does that not illustrate what she is saying?

[Julie Cooper]

The hon. Lady makes a really important point. I would be the first to speak up for the skills of community pharmacists, but that measure is a passing of the buck. It does not put the interests of patients and their safety first and foremost, which is very worrying.

I move on to the life science industry and research, which several Members have touched on. The UK is a world leader in life sciences and a major centre for research. The sector employs 220,000 people and attracts some of the finest research talent in the world. Four of the world’s top six universities for the research and study of clinical and health topics are based in the UK. Biotech company clusters and partnerships are found across the country, making up the largest biotech pipeline in Europe. It is a fact that the UK has been the recipient a bigger share of EU research funding than any other EU nation. It is hard to overstate the importance of the EU to the biomedical sector in the UK and the health outcomes for British patients. Shared initiatives—such as the “New Drugs for Bad Bugs” programme, which aims to tackle antimicrobial resistance—in which pharmacologists from across the EU work together for mutual gain are incredibly important for the future. As we leave the EU, we risk losing the benefits that arise from being a hub for world-class research. The investment, the talent and the infrastructure, including jobs, are all at risk. The removal of those benefits has begun, and arrangements are already in place to relocate the European Medicines Agency from London to Amsterdam.

Time is short, and there are many issues of concern about this subject. One key concern is workforce. I agree with the hon. Member for East Kilbride, Strathaven and Lesmahagow (Dr Cameron), and I thank our NHS staff for the tremendous work that they do. I pay tribute to the excellent service that we still enjoy, in spite of the many challenges. It is because of that excellent service that we feel so passionate today; we do not want to lose it. I also put on record my thanks to the care workers, especially those who have helped me to look after my mum. It just so happens that they come from Poland and Latvia, and they are amazing, but their status is at risk.

Hon. Members have talked about the existing challenges in the workforce, and rightly so. We already have a workforce crisis in the NHS and in social care. There are many reasons for that, including some that have already been mentioned: we do not train enough staff; we put up barriers to training, including the removal of bursaries; and working conditions and pay are often not what they should be, as the hon. Member for Strangford (Jim Shannon) said. There is no doubt that making it more difficult for EU health professionals and EU carers to work in the UK will not help the situation we face.

The scale of the contribution from the EU cannot be underestimated: 5.6% of the total NHS workforce come from the EU. In addition, we already have 100,000 care workers from the EU working in this country, and we know to our shame that we currently have 1 million vulnerable people with unmet care needs. I appreciate the points that the hon. Member for Henley made about the excellent work in his constituency, but I point out to him that the majority of care for vulnerable people is delivered in their homes—or not delivered, in many cases, which is a massive problem for us.

To replace the EU NHS staff and the contribution that social care workers from the EU make would be extremely costly to the NHS. It certainly will not be a saving to the nation. The worst situation we could face would be if the Government failed to prevent a no-deal situation. There are ways of coping with all the other areas, given time and a transition period. I am keen to stress to the Minister that this is not about scaremongering, but about sensible concerns and a reassurance that sensible provision is in place.

I want to touch on future trade deals. People rightly raise concerns that many of the current problems experienced in both health and social care have arisen as a direct result of the fragmentation and privatisation of provision following the Health and Social Care Act 2012. There is a risk that future trade deals will add to the problem of privatisation.

In the months leading up to the referendum, the people of this country were promised that there would be a Brexit dividend for the NHS, and the figure of an additional £350 million per week—surely the biggest exaggeration of the Brexit campaign—was irresponsibly promoted. However, the reality is that in the light of the Government’s own predictions of low economic growth, there will be less funding for the NHS after we leave the EU. The Government are also very clear that if we leave the EU next week with no deal, the economic cost to our nation will be even greater.

It is our duty to respect the result of the referendum, but as public servants it is our highest duty to ensure that our constituents’ standards of health and wellbeing are protected. The NHS is regularly cited by the British public as one of the greatest achievements of—I have to say—a Labour Government. Brexit was sold as a way to protect the NHS, and no matter how misguided that promise was, as servants of the people we must deliver on it. Protecting the NHS is also the will of people, as they have shown in many elections.

To protect the NHS and to respect the will of the people, can the Minister provide assurances on the specific points that have been raised today? Can he confirm that the Government will rule out no deal and minimise the potential for negative impact on the NHS and social care sectors? Can he demonstrate that he is not ignoring the legitimate concerns raised today and out there in the community, from Members of this place, from patients and their representatives and from healthcare professionals? Can he demonstrate that the Government are listening and have sensible provisions in place, and that they will take every step to avoid a no-deal Brexit next week?

--- Later in debate ---

[Stephen Hammond]

I reassure the hon. Lady that we have been working since last August to ensure that companies understand the routes available to maintain continuity of supply, including air freight routes. We will ensure the potential use of those alternative shipping or air freight routes because, as she rightly points out, these are short-life products. The worst-case scenario—no deal—has been looked at, and routes will be available to ensure that medical isotopes can continue to come into this country.

The hon. Lady referred in her speech to the operationalisation of those plans, which is relevant. Normally, if sea routes are used, it can be ensured that medical isotopes or short-life products are at hospitals by 9 am. She referred to the likelihood that, if air freight routes are used, those products would not arrive until midday, which the NHS advises us would mean that some clinics would be likely to be rescheduled to later in the day. People’s opportunities to undergo treatment will not be interrupted.

[Julie Cooper]

Will the Minister very quickly give way on that point?

[Stephen Hammond]

Very quickly.

[Julie Cooper]

I hear what the Minister says about making his best efforts to ensure that there is no interruption of supply. However, does he accept that, as of yesterday, health professionals who deal with this were not reassured? We could be in a no-deal situation in just over a week’s time. Will these arrangements hold good in a no-deal situation? Will he assure us that those vital isotopes will be in the places where they need to be?

[Stephen Hammond]

Had the hon. Lady joined me in walking through the Lobby to vote for the withdrawal agreement—so that Brexit would happen on 29 March and leaving without a deal would be impossible—she would know that all the arrangements currently in place would pertain. We are talking about arrangements for a no-deal situation, which I and the Government certainly hope will not happen. These arrangements are specifically designed to ensure that arrangements are in place for no deal.

In the short time I have left, I will stress the continuity of supply. It is essential that any responsible Government, even if they wish for a different outcome, should prepare for the outcome that they do not want, which in this case is no deal.

Children with Life-limiting Conditions

Julie Cooper Excerpts

Tuesday 29th January 2019 Westminster Hall

[Julie Cooper (Burnley) (Lab)]

It is a pleasure to serve under your chairmanship, Ms Dorries. I am grateful to the hon. Member for Strangford (Jim Shannon) for securing a debate on this very important subject. I pay tribute to all the dedicated people in hospices, in the community and in hospitals who support families with a seriously ill child. I also thank organisations such as Together for Short Lives, CLIC Sargent and the Rainbow Trust, which do excellent work to provide support.

Hon. Members across the House have made powerful speeches on a very emotional subject. I am grateful to them all. I can think of few things in life worse than for a parent to hear that their child is so seriously ill that they cannot expect to live a full life, or to live with the knowledge that their child will never grow into adulthood, and will die before them. That must be absolutely devastating and is against the natural order of things. The pain is almost unimaginable. I pay tribute to my hon. Friend the Member for Swansea East (Carolyn Harris) for sharing her moving story and for the work she does to support other parents to get through very difficult times.

In the United Kingdom, 49,000 babies, children and young people, and their families, are coping with life-threatening and life-limiting conditions. In recent years, the Government have made various commitments to deliver support for appropriate end-of-life care that recognises the difference between the end-of-life care needs of children and those of adults. The needs of children and young people in that situation are invariably more complex and can be longer term. The children’s charity CLIC Sargent reports that four out of five children survive cancer for five years or more. In fact, many children with life-limiting conditions live into adulthood. It is clear that although they may not need end of life care, they and their families usually need access to expert support and palliative care in a children’s hospice, at home or in a community setting.

As children with life-threatening and life-limiting conditions increasingly live into adulthood, it is more important than ever that they are able to express their care preferences and that the continuity and co-ordination of their care is assured. In 2016, the Government committed to offering children and their parents the right to be involved in choosing and accessing the most appropriate care. NICE guidelines published in December 2016 stated that local commissioners and providers should prioritise advance care planning and agree in partnership, in a responsive and flexible fashion, the place and delivery of that care.

However, the reality is a postcode lottery. We heard many good examples of that. My hon. Friend the Member for West Ham (Lyn Brown) spoke movingly about the plight of Maryam and the fact that children in England still do not have access to what is effectively a life-saving and life-enabling drug. I hope the Minister listened very carefully to that. My hon. Friend the Member for North Tyneside (Mary Glindon) raised similar concerns about what children and their families suffer.

Shockingly, 46% of CCGs are failing to implement the Government’s end of life care commitments. I note that when Ministers are questioned on the provision of health and social care services for disabled children, their answer invariably includes the words, “The commissioning of health and social care services is the responsibility of clinical commissioning groups and local authorities respectively.” That is all very well, but agreed standards are not being implemented.

I know the Minister cares about this issue, but there is a worrying lack of accountability. Will she outline what steps the Government will take to bridge the accountability gap? Will she clarify who is responsible for commissioning palliative care and who is responsible for commissioning respite breaks for families? Respite breaks provide essential relief for the parents and siblings of children with severe life-threatening and life-limiting conditions; they are often the difference between coping and not coping. Does she agree there is a desperate need for a review of all commissioning of palliative care and support services, and that the Government need to develop an overarching strategy to bring an end to the postcode lottery that leaves so many families struggling to access vital services?

An important part of the support available is provided by children’s hospices. We have heard many examples of those; the hon. Member for Eastbourne (Stephen Lloyd), my hon. Friend the Member for Lewisham West and Penge (Ellie Reeves) and others talked about excellent hospice care. In the main, hospices are charitable organisations that rely for the majority of their funding on donations and fundraising in the local community. The current economic climate makes it more difficult for hospices to raise the requisite funding; at the same time, the proportion of funding provided by the NHS is falling. Again, there is no consistency or strategic oversight of the amounts that CCGs and local authorities contribute.

[Liz Twist (Blaydon) (Lab)]

My hon. Friend mentions the fundraising that is done by some excellent organisations and lots of individuals, some of whom we have heard about. Does she agree that the Government should undertake to fund increased pension contributions for staff working in hospitals, instead of giving with one hand and taking with the other?

[Julie Cooper]

I totally agree, and I will come to that point in a moment.

The average NHS contribution to children’s hospices is only 9%. Recent additional costs relating to the implementation of the NHS staff pay award and extra pension costs have pushed many hospices into a dire financial position, with closure a real possibility. Where hospices are forced to close, the NHS is left to fund the entire cost of health and social care for those children and young people.

In that context, the announcement by NHS England in December of £25 million of extra funding for children’s hospices was extremely welcome. However, children’s hospices do not know how to access that extra funding. Derian House Children’s Hospice in Chorley, which currently supports 12 families from my constituency, told me this week that there is no clarity about how that newly committed funding can be accessed. As many Members mentioned, since the publication of the NHS 10-year plan there has been confusion about what exactly has been promised.

The Minister will be aware that the 10-year plan promises that, over the next five years,

“NHS England will increase its contribution by match-funding clinical commissioning groups (CCGs) who commit to increase their investment in local children’s palliative and end of life care services including children’s hospices.”

Does she agree that that is confusing, and will she clarify the following points? Will the £25 million promised in December be only for children’s hospices or for a wider group of children’s palliative care services? Can she guarantee that, as a result of the long-term plan, the £11 million children’s hospice grant will be protected and increased to reflect the growing demand and complexity of care provided by those lifeline services? The total spend on children’s palliative care in hospices, hospitals and the community currently exceeds £25 million, so the promised funding could be viewed—I am sure this is unintentional—as a cap on NHS spending on children’s palliative care. In the light of that, can she reassure me that the NHS will indeed provide additional funding for children’s hospices?

I turn briefly to the financial pressures that parents of children with seriously ill children often experience. The 2018 “Counting the cost” survey of families who provide long-term care for a disabled child found that many experienced huge financial difficulties. A third of all families surveyed said they had additional costs of more than £300 each month. Some 46% of families had been threatened with court action for non-payment of bills. That is hardly surprising given that 87% of the families surveyed were unable to work because of their caring commitments.

CLIC Sargent has highlighted that children suffering with cancer often have to travel longer distances than adult patients for regular treatments, placing a significant additional financial burden on parents already coping with so much. Will the Minister commit to introducing a package of financial support that includes a children and young people’s cancer travel fund for parents who care for children with life-threatening diseases? Will she also spare a thought for bereaved parents and accelerate the introduction of the children’s funeral fund that so many Members have requested?

In conclusion, I ask that the Minister answers the specific points that I and other hon. Members have raised, and commits to implementing a comprehensive strategy that provides a consistent standard of joined-up, adequately funded children’s palliative care that has full parity with adult care.

[Ms Nadine Dorries (in the Chair)]

Minister, will you leave one minute at the end for Mr Shannon to wind up?

--- Later in debate ---

[Caroline Dinenage]

I know that we are planning to meet next month to discuss this issue in more detail, but my understanding from the announcement in the long-term plan is that there will be an increase in funding for children’s hospices. I would not support a move towards anything other than that, so we are certainly in agreement about the value that children’s hospices offer up and down our country.

In July 2016, “Our commitment to you for end of life care” set out what everyone should expect from care at the end of life, and the actions being taken to make high-quality personalised care a reality for all. NHS England is responsible for delivering that commitment in partnership with key stakeholders through its national end of life care programme board. The hon. Member for Strangford mentioned ensuring that sustainability and transformation partnerships and integrated care systems deliver care in a way that supports their local population. NHS England is already working with Public Health England and the Care Quality Commission to provide bespoke end of life care data and support packs to STP and ICS areas, to help plan for and improve end of life services.

NHS England is developing a new indicator for clinical commissioning groups to measure deaths in hospital after three or more emergency admissions in the final 90 days of life. That sounds like a technical piece of data to collect, but such vital information will help us to understand exactly what care is being delivered, and ensure that we spread best practice and identify areas for improvement.

The hon. Gentleman rightly highlighted the crucial role that leadership and accountability play in commissioning those vital services, and NHS England has and is seeking to improve support for commissioners when funding and delivering children’s end of life care. In April 2017 it made available a new specialist palliative care currency—one for adults and one for children—to support local areas in planning and delivering services, including hospice services. The currency can help local services better understand complexity of care and the investment needed to deliver it. It can be difficult for some commissioners to develop suitable models to meet children’s needs, given that in some geographical areas relatively small numbers are involved. That is why NHS England has established an expert group, which includes Together for Short Lives, to bring together knowledge and expertise in children’s end of life care, consider developing models that are suitable for that incredibly vulnerable group of patients, and set up pilot models of care that will be implemented later this year.

A number of hon. Members mentioned short break services, and access to respite and short breaks is fundamental for many families and carers. Local authorities have a legal duty to commission short breaks, and although the NHS’s role is not statutory but a matter for local commissioners, it may also provide clinical support. Having the reassurance of clinical oversight can often mean the difference between carers taking those much-needed breaks and feeling unable to do so, and it is important that such work is collaborative. A recent report from Together for Short Lives found that 84% of clinical commissioning groups said that they commission short breaks for children who need palliative care—an increase from 77% in 2018. We want to ensure that 100% of clinical commissioning groups make such a contribution so that carers have access to the breaks they need. NHS England provides bespoke data and commissioning support to STP and ICS areas to enable them to plan and deliver effective services, such as short breaks, for children and young people.

Access to and quality of palliative and end of life care goes beyond funding for hospices, and through the long-term plan we are accelerating the roll-out of personal health budgets to give people greater control and choice. We want 200,000 people to benefit from a personal health budget by 2023-24, and that will include things such as provision of bespoke wheelchairs and community-based packages for personal and domestic support. NHS England is expanding the offer of mental health services to people receiving social care support and those receiving specialist or end of life care.

[Julie Cooper]

Does the Minister agree that the 49,000 babies, children and young people who have been diagnosed with life-threatening or life-limiting conditions would all benefit from a personal finance plan?

[Caroline Dinenage]

That is right. The system has to be rolled out carefully because we must get it 100% right. It is a jointly funded and collaborative system, but at the end of 2018 it covered 32,000 people, and by 2023-24 it will cover 200,000 people. That shows enormous progress and commitment, and it will give those who want it more choice and control over what kind of care and support they need to meet their needs.

NHS England is developing a refreshed end of life care core skills education and training framework to standardise training, and the NHS now employs more staff than at any other time in its history. The data does not identify nursing specialities, such as palliative care, but the hon. Member for Eastbourne (Stephen Lloyd) may be interested to know that 648 full-time equivalent doctors are working in palliative medicine, which is 202 more than in May 2010—an increase of 45.2%. NHS England’s long-term plan sets out how it will work with patients, families, local authorities and voluntary sector partners to personalise and improve end of life care.

I will write to the hon. Member for Strangford about NHS pensions and hospices. I was going to mention “Agenda for Change”, but I do not have much time and I wish to leave him time to conclude the debate. I thank all hon. Members who have taken part in this debate. We know there is more to be done to meet our ambition to reduce variation at the end of life and ensure proper support for children with life-limiting conditions and their families.