Mental Capacity (Amendment) Bill [Lords]

Catherine West Excerpts

3rd reading: House of Commons & Report stage: House of Commons
Tuesday 12th February 2019 Commons Chamber

[Chris Bryant]

I have had lots of discussions, some of them more fruitful than others, with the Football Association.

It is wholly to be deprecated that FIFA still will not allow a full substitution for an assessment of brain injury during a match. Ten minutes are needed to do a proper assessment on the pitch, but at the moment only three minutes is available in a FIFA match. There can be no substitution, and it is not therefore in the team’s interests to take the person off the pitch. I think that this must change. If there is one thing that I hope Parliament will say to FIFA about this in the next few months, it is that this must change. People we talk of as heroes, such as Jeff Astle, have died because of heading the ball. If those who are heroes to our young people today end up suffering in later life because of what they sustained in their footballing career, we will have done them a terrible disservice.

[Catherine West (Hornsey and Wood Green) (Lab)]

Does my hon. Friend agree that this applies equally to those who play rugby league, and in fact perhaps more, given the impact that some tackles occasionally have?

[Chris Bryant]

My hon. Friend makes a very good point. One of the things about rugby league and about rugby union, which I know rather better, being from south Wales—[Interruption.] I do not think it is parliamentary to tut-tut from the Chair, Mr Deputy Speaker, if you don’t mind my saying so. The truth is that many of the players today are bigger, stronger and faster, so the impacts may be much more significant than they were in the past. Curiously, when we watch some of the commentary on Twitter and Facebook about matches, we see a kind of rejoicing in the physical pain that people are going through, and I think we really need to roll that back. We need to roll that back so that we are actually caring about the players. Quite often the players themselves will be desperate to go back on. It should not be the player who makes that decision; it should be an independent doctor who makes it. [Interruption.] I think you want to intervene on me, Mr Deputy Speaker.

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[Catherine West (Hornsey and Wood Green) (Lab)]

May I pursue the intervention from the right hon. Member for North Norfolk (Norman Lamb)? Is the Minister satisfied that the definition of the deprivation of liberty will not lead to litigation in the courts? Some constituents have written to me saying that the proposed changes could open a legal can of worms. Can the Minister reassure me that this will not end in expensive litigation, either for constituents or for the Government?

[Caroline Dinenage]

I do not think it is ever possible to say that. This particular area of law has always been open to legal challenge. We decided to include a definition because so many stakeholders, as well as the Law Commission and Members of the other place, thought it essential, but the wording is very specific.[Official Report, 13 February 2019, Vol. 654, c. 7MC.] It refers to what does not constitute a deprivation of liberty rather than what does, because we did not want to leave out accidentally something that could open up a legal challenge further down the line. This is where the code of practice comes into its own. It will include case studies and examples, so that those affected by the Mental Capacity Act will have a better understanding of how it works for them.

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[Caroline Dinenage]

Yes, we envisage that there will be training and we will be working with partners such as Skills for Care to look at the best ways of implementing that sort of support.

[Catherine West]

Could the Minister outline the role of care staff in preparing the documentation and making ready for the assessments, as opposed to the role of the responsible body—the local authority—that will make the assessment?

[Caroline Dinenage]

I am actually coming to that very section of the Bill now.

We are proposing that a review of an authorisation will be completed by an approved mental capacity professional when an objection is raised by someone with an interest in the cared-for person’s welfare. It is vital that objections can be raised not just by the person themselves but by others who have an interest in their welfare. This could be a member of the care staff, a close friend or a family member. The Government amended the Bill to clarify that objections can be raised at a pre-authorisation stage, and these new amendments clarify that objections can be raised at any time throughout the authorisation and can lead to a review of the ongoing need for deprivation of liberty.

Amendments 39, 40 and 42 relate to authorisations that need to vary in order to prevent them from ceasing because small variations need to be made. Under the current deprivation of liberty safeguards system, an authorisation is tied to one specific location. This creates a situation in which a person has multiple authorisations if they need to move between settings. If a person is in a care home and has a planned stay in hospital, for example, a new application has to start from scratch. The Law Commission recommended that authorisations should be able to cover more than one setting to remove that duplication. There is an exception if someone needs to go into hospital in an emergency, when variations can be made without a review taking place first, but one should be held as soon as possible afterwards. In some cases, the responsible body will change even though the person still resides in the same location. For example, a care home resident may become eligible for NHS continuing healthcare, but their location and care will not change.

Opposition amendment 49 seeks to require the responsible body to carry out the consultation required by the Bill in every case, removing the ability of the care home manager to complete the consultation. We are clear that it is not appropriate for certain functions to be conducted by the care home manager, which relates to what the hon. Member for Hornsey and Wood Green (Catherine West) was saying. The Bill explicitly prevents anyone with a prescribed connection to a care home, which will be set out in regulations and will include care home managers and staff, from completing the assessments required for an authorisation and the pre-authorisation review. We are clear that decision making lies with the responsible body, not the care home manager.

Consultation is another matter. We expect, as part of good care, that care providers are consulting with the people in their care, and with those with an interest in that person’s welfare, to establish their needs, wishes and feelings. That applies regardless of whether someone is subject to a liberty protection safeguard and should happen on an ongoing basis. Having care home managers complete the consultation required by the Bill is simply building upon current good practice. The Bill has clear safeguards for that purpose. Objections do not need to be raised through the care home manager. They can be raised directly to the responsible body by the person or by someone interested in their welfare. If there are concerns about the care home manager’s ability to complete the consultation required under the Bill, the responsible body can decide to take on the care home function and complete the consultation itself.

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[Barbara Keeley]

I thank the hon. Gentleman for that question. We have had no reassurances whatever. In fact, since the Committee finished, £1.3 billion has been taken out of central Government funding to local councils. Whatever our position was when we were in Committee, things are now much, much worse.

The Minister does not agree, but it is disturbing that we are still in the position on Report of trading the arguments back and forth. We gave lots of examples. There is provision in the Bill for an approved mental capacity professional. With our amendment we want to be sure that we do not have cash-strapped local councils delegating responsibility. There is talk under some amendments to bring in reviews, but reviewers have to be able and willing to stand up to care home managers, and that is a difficult thing.

As my hon. Friend the Member for Bridgend (Mrs Moon) said earlier, care home managers have a lot of power. They have the power to evict and the power to stop visits. Amendment 49 would work with amendment 50 to address the role that the care home manager could play. It is one of the most concerning provisions in the Bill, and it must be addressed if the new liberty protection safeguards are to be fit for purpose.

I do not in any way want to stigmatise care home managers, but I ask Government Members to accept that we are talking about a situation where at least 20% of care homes require improvement or are rated inadequate. Care home manager vacancies are at 11%. We are not talking about a situation where all care homes have a proper care home manager in place, or where they are all doing as well as they could. If the Minister reads many CQC reports, she will see that care homes often fall down on care planning. CQC inspectors often find that there is not a proper or adequate care plan for the situation.

[Catherine West]

Is my hon. Friend satisfied that rights of appeal are being managed correctly in the Bill?

[Barbara Keeley]

No. On the Opposition Benches, we are not satisfied with very much about the Bill, but I am talking about our amendments for care home managers because we feel that safeguards have been weakened. I will give an example, because there are many cases where the powers of care home managers are used to shut down any opposition to what they are doing. A person whose husband was in a care home visited him every day and took a keen interest in his wellbeing. He had lost the ability to speak and had little mobility. She found that he was in pain and when she raised that with staff, they failed to act and dismissed her concerns. She then raised it with the care home manager who warned her that if she continued to take up staff time, she would be banned from visiting her husband who was actually nearing the end of his life. That is an awful thing—that a wife would be banned from visiting her husband near the end of his life. It was only with the help of an outside organisation that the cause of the pain was identified. If relatives, including spouses, were prevented from visiting in the situation that I have just described, how could they be raising a major objection? How could they be challenging the care home manager? The appeals question that my hon. Friend the Member for Hornsey and Wood Green (Catherine West) just raised with me is very concerning.

Under the current provisions of the Bill, care home managers are expected to carry out the consultation process, and yet this is the one opportunity that the cared-for person and their family have to register any objections to the proposed arrangements. The process needs to be carried out independently so that people can feel free to speak their minds. Amendment 49 achieves that. It prevents the local council from delegating the consultation process to the care home manager, and then this crucial step must be carried out by the local council itself.

In Committee, the Minister said she believed that it could be appropriate for a care home manager to carry out that process, because those with an interest in the welfare of the cared-for person can flag up objections, but that would not always work in practice. For that to happen, a family member would have to know that they had the right to do that. They have to know with whom to raise their objection and then raise it in a timely manner. That is pretty key in relation to this business of care homes and to challenging on behalf of the cared-for person. It is not reasonable to expect people to understand the intricacies of the system. Similarly, we cannot expect everyone to have the confidence to negotiate the system for themselves. We here perhaps do not always think how hard it is to challenge those in authority, but it is a very difficult thing to do indeed. We need to offer a cared-for person a chance to object in a setting that they are comfortable with, without fear of reprisals from care home managers.

Government amendment 38 goes against the principles that I set out in relation to our amendment 49. It is unacceptable for the care home manager to be involved in that consultation with the cared-for person and their family, so we are in a situation where the two amendments are directly opposed.

Let me move on to our third amendment, amendment 51, on advocacy, because that addresses the provision of independent advocates for cared-for people. That is a crucial safeguard, which enables people to realise their rights under the Mental Capacity Act 2005. The advocacy system proposed in this Bill is excessively complex. It could see people being denied an advocate when they need one. Our amendment seeks to simplify the system, ensuring that advocacy becomes the default option. Stakeholders have told us that they are concerned about the use of a best interests test to determine whether somebody should receive an advocate.

Clearly, there is a situation in which the Minister thinks that a best interests test is used to avoid overriding the wishes and feelings of the cared-for person. We agree that advocacy should never be forced on somebody, but we must be explicit about this principle of advocacy being available as the default.

[Catherine West]

My hon. Friend is so generous in taking interventions. Does she agree that there is no consistency in the choice of advocates across the regions?

[Barbara Keeley]

That may well be the case, but the difficulty here is that we have a complex system when we should have a simple system that clarifies that an independent advocate, an IMCA, should not be appointed if a cared-for person objects to it, but that everyone who wants or needs an advocate can get one. There should be an absolute right to request that an advocate be appointed both for the cared-for person and for any appropriate person who is representing them.

Our amendment would ensure that support is provided where an appropriate person is not able, on their own, to give the cared-for person the support that they need. That is particularly important, and there are many examples. I am sure that the vast majority of responsible bodies would not exploit loopholes, but we feel that there are loopholes in the current situation.

Budget pressures are another concern. There are concerns that advocates may not be allocated because of Government cuts to local council budgets. We feel that it is important that the wording from the existing Mental Capacity Act is retained. Let me give an example. The concern was put succinctly in evidence submitted to the Public Bill Committee by the Doughty Street Chambers Court of Protection team, who said:

“The requirement to ‘take all reasonable steps’ is a weakening of the current requirement that the supervisory body must appoint an IMCA...It is therefore possible that a ‘cared for person’ may qualify for an IMCA but that due to resource issues the reasonable steps taken do not result in such an appointment, and this safeguard may not be available.”

From everything the Minister has said, I know that she agrees about the importance of advocacy, and we have heard a lot of case studies, one of which I will briefly mention. My hon. Friend the Member for Slough (Mr Dhesi) described a case that has stuck with me since. An advocate was visiting a man in a care home who was clear that he wanted to leave and move back to his own home. When the advocate looked into the matter further, they discovered that the man’s home had been put up for sale by the local council to fund his care. He had no idea that that was happening and was extremely upset. With the help of an advocate, he was able to challenge the local council’s decision and prevent his home from being sold. I recall that example from Committee, and it is a powerful one that demonstrates just how important an advocate can be. Without one, this man’s home would have been sold without his knowledge, and he would then have been forced to remain in a care home that he wanted to leave. There are countless examples of how important an advocate can be.

Mental Health Units (Use of Force) Bill

Catherine West Excerpts

3rd reading: House of Commons
Friday 6th July 2018 Commons Chamber

[Catherine West (Hornsey and Wood Green) (Lab)]

It is a privilege to contribute briefly to this Third Reading debate. I congratulate my hon. Friend the Member for Croydon North (Mr Reed) on getting the Bill to this stage, and hope that there will be sufficient support for it when we vote later.

As a patron of Mind in Haringey, I know that there is a real sense of urgency regarding the need to improve the quality of services in mental health provision, not only locally but nationally. Whether it is basic primary care assistance to prevent the decline in a patient’s mental health, or at peak crisis time when psychosis, mania or the depths of the lows for a bipolar sufferer strike, it is crucial that care is provided in a professional, sensitive and compassionate manner.

Tragically, the Bill does not reflect the fatal experience of just one 23-year-old young man from my hon. Friend’s constituency: Seni Lewis died following restraint by 11 police officers while he was in a mental health unit. That was not an isolated incident. Thousands of patients have suffered abusive restraint, with too little guidance and supervision for police and mental health professionals on how best to manage mental health crisis. The high number of injuries—3,652 this year, according to the women’s charity Agenda—has been compounded by the reduction in spending on mental health wards, the cuts to training budgets for support workers, and the increased social isolation experienced by people with poor mental health. All too often, the warning signs are not picked up until a patient is very ill. Because of the lax reporting requirements on the use of restraint in the sector, it is likely that the available statistics under-report the extent of poor practice.

In a similar case highlighted by the charity Inquest, Surrey dad Terry Smith suffered at the hands of those who owed him a duty of care and he died in an ambulance, following restraint. When his behaviour became worrying, Terry’s family knew that he needed an ambulance; instead, he was met by police who, rather than seeing a vulnerable man in crisis, pursued, restrained, bound and hooded him, and then took him to a police station rather than a hospital. They only called for an ambulance when it was too late.

Seni’s law will strengthen the guidance for police and mental health professionals so that medical emergencies are recognised as such and acted on speedily. The incident occurred before the introduction of body-warn cameras. It was pleasing to hear the hon. Member for Shipley (Philip Davies) speak about best practice for body-warn cameras. When the Bill passes into law, it will assist many of our constituents, but it will disproportionately protect the high number of young women who are restrained and the high number of black and ethnic minority patients who suffer the highest number of injuries in mental health facilities.

In my first Adjournment debate, shortly after I entered the House in 2015, I highlighted the desperate need for better resourced, higher-quality mental healthcare in my constituency. This Bill will go some way towards that by bringing more clarity and better reporting standards and it will set the bar higher for police and NHS staff, as well as for mental health advocates, but most importantly it will set the bar higher for those constituents whose pain is often invisible, inexpressible, frightening and overwhelming, and who sadly so often miss out on what we all expect from health carers: clarity of purpose, clear communication, understanding and compassion.

Phenylketonuria: Treatment and Support

Catherine West Excerpts

Tuesday 26th June 2018 Westminster Hall

[Catherine West (Hornsey and Wood Green) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Robertson. I congratulate my hon. Friend the Member for Blaydon (Liz Twist) on securing this important debate. I will speak on behalf of my 11-year-old constituent, Olivia, and describe a bit of her struggle. I congratulate her parents on fighting so hard for her, because the stress on families is incredible. We have heard from many hon. Members about the impact that PKU can have on the whole family and just how isolating it is. The National Society for Phenylketonuria is helping us as parliamentarians to get to grips with the issues.

We have heard how restrictive the diet is. My hon. Friend the Member for Newcastle upon Tyne North (Catherine McKinnell), who is no longer in her place, talked about going to a pizza restaurant at the age of 18. Olivia is 11, but she is allowed only 8 grams of protein a day. She was fortunate enough to participate in the one-month trial of Kuvan, and she was found to be a responder. Her protein tolerance increased from 8g to 27g. On Kuvan, she had safe, low blood results and ate healthy, natural, normal vegetarian food. She could have baked beans at school on a Friday with a normal-sized portion of chips, just like her friends. It filled her plate—and her, instead of leaving her hungry. Her teachers commented on how bright and focused she was in lessons. Ironically, they asked, “What did she have for breakfast today?” Olivia loves life, and, during that month on Kuvan, it showed, just as it does for everyone else.

As many hon. Members have pointed out, it seems anomalous that a drug that is licensed in the US and the EU is still so difficult to obtain for our constituents. NHS England has handed the draft policy on commissioning Kuvan to NICE for review, but no date has been set. I press the Minister for a date, because it is absurd that Kuvan has been prescribed for years as a routine treatment in the rest of the developed world.

For Olivia, the waiting is taking its toll. She has frequent and severe migraines that cause vision disturbance, light, sound and taste sensitivity, vomiting and gastroparesis. During such times, she loses her PKU supplement and exchanges food, which takes her off diet for the duration of the migraine. They are difficult times for the whole family. Her illness and temporarily altered sense of taste mean she cannot drink the supplement and wants the normal food she prefers. How could anyone refuse a sick child because the food contains too much protein? She can be off diet for 60 hours.

Last year, Olivia was also diagnosed with moderate to severe scoliosis—a curved spine—for which she has to wear a back brace for 23 hours a day until she is 16 years old. It is uncomfortable, painful, and often prevents sleep. Her consultant said that spinal fusion surgery would likely be advised, but PKU is likely to result in low bone density, especially among girls. Olivia had a scan that showed that her bone density was abnormally low and getting worse.

Nothing more can be done dietetically; the amino acid supplement contains the correct levels of calcium, vitamin D, vitamin K and potassium, but it does not contain whole protein, which plays a major role in bone density. By definition, the diet goes to great lengths to avoid whole proteins, and that is one of the consequences. Olivia may therefore never be able to have the spinal fusion surgery that she needs, because her bones are not strong enough to take the screws and rods that would need to be drilled and fixed to her spine. Kuvan would at least allow her to eat more whole natural protein. Would that not be better for her, and everyone else who has been mentioned? The only access route to Kuvan remains an individual funding request. I hope that the Minister will consider that issue in his response.

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

It is a pleasure to serve under your chairmanship, Mr Robertson. I thank my hon. Friend the Member for Blaydon (Liz Twist) for securing this important debate, for her excellent speech and for all her campaigning on the issue. I also thank all the Members who have spoken this morning. There has been a good number. I thank the hon. Member for East Renfrewshire (Paul Masterton), my hon. Friend the Member for Portsmouth South (Stephen Morgan), the hon. Member for Waveney (Peter Aldous), my hon. Friend the Member for Dudley North (Ian Austin), the hon. Members for Chelmsford (Vicky Ford), for Dwyfor Meirionnydd (Liz Saville Roberts), and for Strangford (Jim Shannon), my hon. Friends the Members for Warrington South (Faisal Rashid), for Hornsey and Wood Green (Catherine West), and for Derby North (Chris Williamson) and the hon. Member for Linlithgow and East Falkirk (Martyn Day) for their excellent contributions to this important debate.

I also thank the all-party parliamentary group on phenylketonuria, which is more commonly known as PKU. I understand the group was only recently set up by my hon. Friend the Member for Blaydon and others. It is already providing an invaluable forum for PKU to be discussed. Finally, I thank the National Society for PKU for the help and support it provides to sufferers of PKU, for its sponsorship of medical research into PKU and for the work it does with medical professionals in the UK. Just last week, it held a particularly informative event in Parliament sponsored by my hon. Friend. I attended it, and I know it will have been helpful in spreading awareness of this extremely serious disease. I found it very useful, and I know other Members did, too.

I had not heard of PKU. It is a rare metabolic disease that causes an inability to break down the amino acid phenylalanine, which can then build up in the blood and brain. Left untreated, PKU causes severe intellectual disability, seizures and behavioural problems. Damage caused by the disease is, tragically, irreversible. That makes early diagnosis and treatment essential. The only treatment available on the NHS for PKU is an extremely restrictive diet. A PKU diet involves avoiding most forms of protein, and taking a special protein replacement—as we have heard, it does not taste as good as what it replaces—to avoid malnutrition. I would like to briefly highlight a number of the problems with the treatment.

First, it is extremely restrictive. Only a small number of foods can be eaten without severe limitation. It is easy to think that almost all food allergies and requirements are catered for in the modern supermarket these days, but with PKU that is not the case. Some of the necessary food replacements are available only by prescription. For some sufferers, the nature of the diet can have a detrimental impact on their social lives, particularly for younger people, as we have heard from a number of Members. Sadly, a high number of PKU patients also suffer from eating disorders and other mental health problems because of it. The NSPKU recommends that all people with PKU should automatically have follow-up appointments with an integrated specialist metabolic physical dietician, along with support from a psychologist and support worker. Is that something the Minister agrees with? Are the Government looking into providing that kind of support?

The second problem with the current available treatment is that it places a huge amount of pressure on those who care for children with PKU. In order to administer the necessary diet, a significant amount of measuring and preparation is required. As we heard at the event last week, dietary care takes on average 19 hours a week according to a recent study.

[Catherine West]

Is the shadow Minister aware that nearly 60% of mothers who care for their children with PKU have some kind of other psychological stress associated with this type of lifestyle?

[Mrs Hodgson]

I was not aware of that fact, but it is hardly surprising when we realise how complicated the diet is. As the child grows, the calculations have to be changed. As we know, children’s sizes change every week, so it is a constant battle to try to get it right, and it is not surprising that that figure is so high.

As the consequences of a child with PKU consuming the wrong type of food are so severe, it is easy to see how much stress a carer can go through in ensuring not only that they are preparing the right food but that a child follows the diet, particularly when away from home, as we have heard, or in school. With that in mind, I want to know whether the Minister believes that patient-centred care should be extended to school support, psychological support and counselling in order to relieve some of the pressure on carers.

When we consider the fact that the consequences of failing to adhere to the necessary diet are so extreme, one would imagine that all treatments that could improve outcomes would be available. Sadly, as we have heard, that is not the case. As has been discussed this morning, a non-dietary treatment for PKU does exist, yet it is not available to patients here in England. Kuvan is a licensed medicine that comes in the form of a simple tablet. In some 20% to 30% of people with PKU, taking Kuvan considerably increases the amount of protein that they can eat each day while maintaining a safe phenylalanine level. Indeed, some patients are able to stop or decrease the use of specially manufactured prescription foods while taking the drug. For those people, having access to Kuvan would literally change their lives and in some cases it would allow them to come off their restricted diet.

Unfortunately, the treatment is not currently commissioned by the NHS, except in a very small number of cases and for women during pregnancy. That is despite its having been licensed in the USA since 2007 and in the EU since 2008. It is used by thousands of patients across Europe and around the world. We heard the full list from the hon. Member for Chelmsford, but I will simply mention such countries as Ukraine, Estonia and Turkey by way of example. Many patients who suffer from PKU will rightly ask why, if the treatment is available there, it is not here?

Although Kuvan is available to women during pregnancy, it can be difficult to get hold of. Tragically, some women with PKU avoid having children altogether owing to fear of the risks to the foetus associated with high levels of phenylalanine. I understand that NHS England has recently referred Kuvan to NICE after it went through its internal clinical panel. Can the Minister explain why there has been such a delay in commissioning Kuvan, and when we can expect it to be available to all patients? Indeed, I understand that it was under the appraisal process in NHS England for seven years.

Access to Kuvan is not the only PKU treatment that has been impeded by the structure of the NHS. For sufferers of PKU, there is a significant risk of variable outcomes and health inequalities, exacerbated by lack of access to special protein replacements and manufactured low-protein foods. Many PKU patients have reported difficulties in accessing the prescriptions they rely on, and some clinical commissioning groups have been found to actively restrict funding for PKU products. Has the Minister had any conversations with Public Health England and the CCGs to ensure that people with PKU have easy access to prescription-only foods and amino acid supplements?

As a parent who watched her children have the heel prick test as babies, I had no idea how important that test was. I had not heard of PKU back then and I thought the test was just a little test in which they check the hips and prick the heel. I can only imagine how it must feel to be the one out of 10,000 parents who receive a life-changing diagnosis for their child, only to find out that their life and the health of their child will be harder than they need to be because of what can only be described as rationing by their CCG and NHS England.

[Catherine West]

Does my hon. Friend the shadow Minister agree with me that it is a disgrace that it takes a court case to get the NHS, NICE and all the other bodies to respond, even when they have heard about the difficult times that families have? Does she agree that a family should not have to take the Government to court to get the treatment that their child needs?

[Mrs Hodgson]

I absolutely agree. It is shocking. I want to end by saying to all the campaigners here and across the country that I hope we have shown in this debate today that we are listening. All their campaigning has not been in vain. It has led to us having an amazing champion in my hon. Friend the Member for Blaydon, and it has led to this well-attended debate today. The Minister has heard all the powerful speeches. He is a compassionate man, so they cannot fail to have had an impact on him. I look forward to his response. This is his opportunity to give hope to thousands of people. Let us hope that he does so.

[The Parliamentary Under-Secretary of State for Health and Social Care (Steve Brine)]

No pressure, then. I will try to give some hope.

Thank you, Mr Robertson, for chairing our debate. I also thank the hon. Member for Blaydon (Liz Twist) for introducing the debate with such humanity. She speaks so well and passionately on this subject. We also heard from my hon. Friend the Member for East Renfrewshire (Paul Masterton), who mentioned the Irn-Bru issue. The Treasury has a policy on the sugar tax, which is part of our child obesity plan. We published the update on that yesterday. The policy long predates me. This subject has not been raised with me before, but we cannot let the bad be the enemy of the good. Taking sugar out of fizzy drinks is a good thing for society, but the unintended consequences of that need to be addressed, and he is right to raise it.

We also heard from the hon. Gentleman from my own county, the hon. Member for Portsmouth South (Stephen Morgan), from the hon. Members for Dudley North (Ian Austin), for Warrington South (Faisal Rashid), for Hornsey and Wood Green (Catherine West), for Derby North (Chris Williamson), and from my hon. Friend the Member for Waveney (Peter Aldous), who always speaks so passionately, from the hon. Member for Dwyfor Meirionnydd (Liz Saville Roberts), and, as always, the hon. Member for Strangford (Jim Shannon), all of whom—I think everybody—touched on the subject of Kuvan. Many touched on the dietary aspect and everybody gave personal examples of constituents. I hope to address all of those subjects.

I congratulate the hon. Member for Blaydon and the all-party group on the work that they do. When I was a Back Bencher I was involved in many all-party groups, including the APPG on breast cancer with the hon. Member for Washington and Sunderland (Mrs Hodgson), who speaks for the Opposition. So much of the good work of this place goes on in APPGs. I hope that the public watching inside and outside today can see that.

The House debated PKU and Kuvan in March this year, led by my hon. Friend the Member for Chelmsford (Vicky Ford), who spoke well again today. I was not able to attend that debate in person back in March, so I am grateful to have the opportunity today to hear the issues around PKU and access to treatments. I have learnt a lot today, as I did in my reading ahead of today. The importance of rare diseases, of which PKU is one, is of course recognised by us and by policy makers and healthcare service providers in the UK and internationally, and rightly so. One in 17 of us will suffer from a rare disease at some point in our lives.

With the number of known rare diseases steadily growing as our diagnostic tools improve, the Government remain focused on and dedicated to improving the lives of those living with a rare condition. That was reinforced in the Prime Minister’s words last Monday at the Royal Free. I was fortunate to be there when she set out a vision for the long-term plan for the NHS, underpinned by increased funding for the service. She said the UK had an opportunity,

“to lead the world in the use of data and technology to prevent illness, not just treat it; to diagnose conditions before symptoms occur, and to deliver personalised treatment”,

informed by our own data, including our genetic make-up. I will say more about that in a moment.

Early and accurate diagnosis of rare conditions is essential for the best outcome for patients with rare diseases such as PKU. We know that without early treatment the outlook for those born with the condition is very poor, as the Scottish National party spokesperson, the hon. Member for Linlithgow and East Falkirk (Martyn Day), and the Opposition spokesperson, the hon. Member for Washington and Sunderland West, said. With early treatment, however, the outlook can be good, which is why, as a number of speakers have said, screening has such a vital role to play. I have two children, and equally watched the pin heel prick with trepidation—little did I know what it could have found. I had no idea what they were doing—I was in that daze—let alone what it could have found, so I have great compassion for people in that moment.

The current newborn screening programme in the UK is based on the blood spot test—the heel prick test that we have referred to—and screens for nine rare but serious conditions, including PKU. With that early diagnosis, treatment can start straight away. For patients with the condition, that treatment includes a special diet and regular blood tests. We have heard so many incredible examples today.

We have heard how severely limiting a protein-restricted diet is and how difficult it must be for any patient to stick to, but particularly for young children. Those of us with young children can really feel that. Children with PKU, as has been said, cannot eat most of the foods that we all take for granted, such as meats, fish, milk and treats such as chocolate—everything in moderation—and that is just to name a few.

I stand here as a Minister, but also as a constituency MP. I, too, had not heard of PKU until constituents brought the condition to me. I recently met with one of my constituents, Sarah, who was a doctor and, like many people, as we have heard, had to give up her job to look after her children. Her three-year-old daughter, who is a beautiful little girl, lives with the condition. I heard first-hand of much of the daily strain that it puts on her daughter and the family. My constituent, like many carers, cares for the child full time—preparing the meals, calculating ingredients and going to doctor appointments—and has had to give up her career. As the hon. Member for Blaydon said in her introduction, when we say that the condition can be treated by diet it sounds quite easy. However, in an email last night my constituent said to me,

“If she goes off ‘the diet’, she will suffer permanent and irreversible brain damage.”

If my seven-year-old boy goes off diet and drinks a fizzy drink we certainly suffer the consequences, but it usually lasts for only an hour. I have a great understanding from today’s debate about that.

I understand that even in adulthood, as the hon. Member for Dwyfor Meirionnydd said, PKU can cause harrowing symptoms that make any attempt at a normal life and contributing to society very difficult and sometimes impossible. The availability of specially formulated low-protein foods and nutritional supplements through the NHS is therefore vital. Since its development in the ’50s, it has saved the lives of and improved outcomes for many patients.

I cannot deny that PKU is not on the list of medical conditions in England that are exempt from prescription charges. As such, only the usual age-related pre-paid certificate exemptions apply to such patients. That is the current situation, but everything can be challenged and can change. As I said at the start, the power of all-party groups is incredible, and perhaps that is something that the all-party group may wish to look at and campaign on.

An awful lot of information is available. My constituent Sarah is also the editor of the National Society for Phenylketonuria’s magazine. She sent me the summer 2018 edition last night, which I read overnight. It was a really interesting read, and I might touch on a couple of things in it before I close. That magazine and its website contain all sorts of information on foodstuffs, advertisements for foodstuffs, products and recipes—and yes, avocado does keep coming up.

[Catherine West]

Will the Minister give way?

[Steve Brine]

I will briefly, but then that will be it, because I know hon. Members want to hear from me, as the Minister. We have heard from Back Benchers.

[Catherine West]

As the Minister knows, there have been five applications for an individual funding request. Two of those were allowed and one, which I mentioned earlier in the debate, had to go to the High Court. The judge declared that the decision that had been made was irrational and unlawful. Will the Minister not just speak about the dietary supplements, which we can all find out from Google, but about what he is doing to push these requests? Specifically, what is he doing on behalf of Olivia, aged 11, whose mother is here today, who would like to know whether he will personally support her application for Kuvan?

[Steve Brine]

I was going to come on to talk about Kuvan; obviously, I stopped to listen to the hon. Lady’s intervention. No, I will not personally support an individual request. That would not be appropriate for a Minister at the Dispatch Box. That is not how our system works, but if she wishes to write to me with the specific example then of course I will see that she gets a reply. That should be handled through the right processes. I know that the processes for individual funding request applications are sometimes torturous, and I am sure that we could do them better.

Let us touch on Kuvan, which everybody has raised. It is one treatment option that has been found to lower blood phenylalanine levels in some patients with mild or moderate PKU. We know that the drug is effective in a small number of patients, depending on their genetic make-up, and is more likely to benefit those with milder forms of the condition. If patients respond to treatment, it is likely that they will still need to continue with some form of dietary restrictions—everyone understands that.

As we have heard, Kuvan is not currently routinely commissioned for use in children and adults. That is due to the lack of evidence of its effectiveness on nutritional status and cognitive development at the time the policy was developed in 2015. NHS England does, however, have a commissioning policy for PKU patients with the most urgent clinical need—namely, pregnant women, as we have heard.

Children’s Oral Health

Catherine West Excerpts

Tuesday 31st October 2017 Westminster Hall

[Steve McCabe (Birmingham, Selly Oak) (Lab)]

I beg to move,

That this House has considered childhood oral health.

Good morning, Mr Bone; it is a pleasure to serve under your chairmanship today. I am glad that we have been granted this debate by the Backbench Business Committee, because child tooth decay represents a much bigger public health issue than appears to have been recognised so far. It is a problem affecting millions of children, including some of the most vulnerable. It should be a real concern to us all.

As well as thanking the various parties for their help in raising this matter, I also want to thank the Faculty of Dental Surgery at the Royal College of Surgeons and the British Dental Association for their efforts in helping to bring this issue to Parliament’s and the public’s attention.

Public Health England reports that 25% of all five-year-olds in England experience tooth decay in at least three to four of their teeth, and that in some parts of the country it can affect as many as 50% of all five-year-olds. Perhaps not surprisingly, there is a link between deprivation and childhood tooth decay, with the poorest areas suffering the worst levels of oral health and the least contact with dentists. A report, shortly to be published by the Nuffield Trust and the Health Foundation, shows that five-year-olds eligible for free school meals are significantly less likely to attend dental check-ups and have more difficulty in finding an NHS dentist.

If we look at the scale of the problem, we will see that more than 45,000 children and young people aged 0 to 19 were admitted to hospital in England over the past year because of tooth decay. They included 26,000 five to nine-year-olds, making tooth decay the leading cause of hospital admissions and emergency operations for that group. Last year more than 40,000 hospital operations for tooth extractions were performed on children and young people, which is the equivalent of about 160 operations every single day.

[Catherine West (Hornsey and Wood Green) (Lab)]

My hon. Friend is making an excellent speech. Does he agree that it is extraordinary that it appears that more children go into hospital because of poor oral health than because of broken arms, whereas when we were children it was definitely the other way around?

[Steve McCabe]

I absolutely agree with my hon .Friend. That gives us some sense of the scale of the problem.

Those 160 operations every single day are not only detrimental to the health and wellbeing of the children; they are also costly to the NHS. In the financial year 2015-16, more than £50 million was spent on tooth extractions for those aged 0 to 19. The average cost of a tooth extraction for a child up to the age of five is approximately £836, and there were some 8,000 such procedures during 2015-16. Dental treatment is a significant cost to the NHS, with spending in England amounting to £3.4 billion on primary and secondary dental care.

In Birmingham, 29% of five-year-olds suffer from tooth decay, which is significantly higher than the national average. Five-year-olds in Birmingham are three and a half times more likely to suffer tooth decay than those in the South West Surrey constituency of the Secretary of State for Health, and yet Birmingham is a city with fluoride in the water. In Manchester, where the water supply is non-fluoridated, the percentage of five-year-olds with tooth decay is 4% higher than in Birmingham. Hospital admissions related to tooth decay for those under the age of 18 in Birmingham have almost doubled in the past four years.

The way in which data are collected and the regional nature of the information sometimes mask the scale of the problems in the same towns and cities. We know that 20% of five-year-olds have tooth decay in south-east England, compared with 34% in north-west England. In Sutton Trinity ward in the Sutton Coldfield constituency, the figure is less than 10%, but the figure for another part of the same city—the Selly Oak ward in my own constituency—is 47%, which is almost twice the national average. Shocking as those figures might be, tooth decay is almost entirely preventable.

Many health experts now agree that early tooth decay can have a broader impact on health and wellbeing, affecting physical and mental health, and impacting on the child’s development and confidence. Poor oral health can also cause children problems with eating and sleeping, which often results in time away from school. Public Health England has conducted research on the number of school days lost due to tooth decay in north-west England. It shows that the average number of days lost per year was three, but many children missed as many as 15 days owing to dental problems.

Some might wonder why childhood tooth decay matters, because children lose their primary teeth which are replaced by new, permanent teeth. The issue is that a high level of disease in primary teeth increases the risk of disease in the permanent teeth. The child’s self-confidence may also be damaged. More than a third of 12-year-olds said in a recent survey that they are embarrassed to smile or laugh because of the condition of their teeth, and that can often make it harder for them to socialise.

So what can we do? There seem to be three crucial steps to addressing the problem: getting children to brush their teeth twice a day; ensuring they see a dentist regularly from a young age; and reducing the amount of sugar that children consume.

Scotland has been running an educational programme called Childsmile since 2001, which has been credited with making a significant improvement to children’s oral health. The programme supports supervised tooth brushing sessions in primary schools and nurseries, as well as providing twice-yearly fluoride varnishes. Perhaps we will hear more about that later.

A similar initiative, Designed to Smile, was introduced in Wales in 2009. Teeth Team, which is supported by Simplyhealth, has invested £137,000 in a dental programme that takes dental education directly to children in local primary schools in the city of Hull.

--- Later in debate ---

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

I congratulate the hon. Member for Birmingham, Selly Oak (Steve McCabe) on securing a debate to highlight this important issue.

We cannot overstate the fact that, as the hon. Gentleman said, oral health problems are the most common cause of admission to hospital for children aged five to nine. I am a children’s doctor—a consultant paediatrician—and I am responsible for the children on the children’s ward in Peterborough City Hospital. They often come in not because they are unwell but because they have had too much sugar and have not had their teeth brushed effectively; their teeth have become rotten, painful and uncomfortable and need to be removed.

As my hon. Friend the Member for Mole Valley (Sir Paul Beresford) said, behind the statistics there are children who are in pain and discomfort, and whose teeth are hurting. They may not want to eat—children who have tooth decay are lighter. There are other reasons for that, but in part it is because they do not want to eat because it hurts when they do. They cannot sleep, which affects their educational performance. As they get older, they do not want to smile because of the embarrassment and discomfort it causes, and that has an impact on their ability to socialise with other children. Perhaps most worryingly, more than 8,000 pre-school children are admitted to hospital each year to have teeth removed. Those children are not responsible for brushing their teeth and do not choose what they eat. Their parents or permanent care-givers are entirely responsible for all aspects of their dental health.

There are two ways to tackle this problem. First, we should address the issue of sugar. I welcome the Government’s proposed sugar tax, because it will encourage children to drink water, which in many areas is fluorinated and better for teeth, rather than sugary fizzy pop, which, as well as containing high levels of sugar, is strongly acidic and therefore detrimental for teeth. It would help if the tax were directed towards sugary drinks, and not spread out across the different drinks that the manufacturer makes.

Secondly, schools should educate children about what to eat. Last week, I went to Washingborough Academy in my constituency, which has an innovative programme for improving school meals for its primary school children. It has a vegetable patch and a fruit orchard in the school playing field, where the children grow their own food and learn about where their food comes from.

[Catherine West]

The hon. Lady is making some excellent points. When I was a council leader, I introduced free school meals for all children up to the age of 11 in all of our primary schools. That increased the take-up of free school meals to 90% across the borough and improved oral health.

[Dr Johnson]

That is an interesting point. The hon. Lady is right that it is important that our children’s school meals are high quality and as healthy as possible.

There are other issues relating to the mechanism by which children consume food. In my profession, I have seen pre-school children given Coca-Cola to drink not in a cup but in a sippy cup or even in a baby bottle with a teat. That is particularly harmful for children, and there should be more education about the fact that it damages teeth. Once children get past 12 months, they should be encouraged to move from bottles and sippy cups on to proper open cups, so that sugary drinks are in contact with their teeth for a shorter period.

If the child is of pre-school age and the parents do not take them to a dentist for whatever reason, health visitors can provide some of this education. It should be part of a health visitor’s role to encourage good oral hygiene in children.

I do not whether I am ageing myself here, but I remember being given disclosing tablets at school and rushing off into the school lavatories to brush my teeth to see what the horrible blue dye had done to the inside of my mouth. I was horrified because, although I thought I had done a great job of brushing my teeth, there was quite a lot of blue staining. That powerful tool should be available to all of our children. My children have recently come home with toothbrushes, toothpaste and some of those lovely tablets. Hopefully, they will have a good effect.

In my reading for this debate, I came across some research in health journals that suggests that the strep mutans and streptococcus sobrinus bacteria increase children’s likelihood of getting tooth decay. In families in which the diet and the amount of sugar consumed is the same and the amount of tooth-brushing is similar, some children get more tooth decay than others. Research suggests that that is due to those bacteria, so we should aim to reduce their presence in the mouth. I will be interested to hear the Minister’s thoughts on that point.

I am pleased that the hon. Member for Birmingham, Selly Oak secured this debate. I congratulate him on raising this issue.

--- Later in debate ---

[Andrew Selous (South West Bedfordshire) (Con)]

It is a pleasure to serve under your chairmanship, Mr Bone.

As several speakers have said, this issue really matters, and it matters throughout people’s lives. A poor set of teeth can affect confidence, which can affect life chances significantly. It is shocking that the most common cause of hospital admission among five to nine-year-olds is tooth decay. According to a recent parliamentary answer, in 2015-16 some 917,346 tooth extractions were performed on children.

I note that in a recent publication the Royal College of Paediatrics and Child Health called for a child’s first dental check-up to be recorded in their personal child health record—that is supposed to happen by the age of one—and for paediatricians to include oral health in the assessment of all-round children’s health. If the first check-up happens by the time the child is one, we can set good habits in place and parents will carry on, knowing that dentistry is free for children.

On fluoridation of the water, which the hon. Member for Birmingham, Selly Oak (Steve McCabe) and my hon. Friend the Member for Mole Valley (Sir Paul Beresford) talked about, I will quote from a Public Health England document published on 14 June 2017. It says:

“An authority considering fluoridation will be met with claims that it does not work and that it causes harm. Both statements are untrue. PHE’s Water fluoridation: health monitoring report for England 2014 concluded that fluoridation is an effective community-wide public health intervention.”

We must be guided by the science in this issue. Many years ago, when I stood for election in Sunderland North, my Labour opponent came out with totally unscientific and untrue statements. We must be guided by the evidence, and I am pleased with what the hon. Gentleman and my hon. Friend said. The evidence seems to be clear that fluoridation is effective. Given the scale of the problem, we should do something about it.

Schools should be sugar-free zones as much as possible. I back banning the advertising of sugar products before 9 pm and would like to see an accelerated product reformulation programme. It is concerning that the reformulation data from August this year will not be made available until March next year. That is an area the Select Committee on Health is taking a close interest in.

As a nation, we have to wake up to the importance of child oral health and not be leisurely about it. It is a public health emergency and there is a degree of urgency to the issue that I want to see reflected in the Department of Health. We could ensure that all sports, education and health settings refused to put sugary drinks in vending machines.

[Catherine West]

The hon. Gentleman is making some excellent points. Does he agree with me that the amount of sugary drinks and products for sale in leisure centres and hospitals seems to send a mixed message?

[Andrew Selous]

I agree with that. Some of the food companies set a lot of store by their links with sport. Of course sport is a good thing—we should all take more exercise—but the key is good oral preventive hygiene and consuming less sugar. When we consider that five-year-olds are consuming their own weight in sugar, we begin to see the scale of the problem. I agree with the point made by the hon. Lady.

I have the pleasure of serving on the Health Committee with the hon. Member for Central Ayrshire (Dr Whitford), who will shortly be speaking for the Scottish National party. She has often told us that Scotland has got certain things better than England, and some of the time she may have been right. On this issue, we can learn from what is happening in Scotland, as my hon. Friend the Member for Mole Valley said as well.

Chapter 3 of the report from the Royal College of Paediatrics and Child Health, which I quoted from earlier, includes some graphs that show improvement in children’s oral hygiene. Somewhat irritatingly, the graphs end in 2013, but the rate of improvement in Scotland is clearly shown to be superior to the rate in England, Wales or Northern Ireland, as a result of the Childsmile programme, which I understand costs £17 per child. Set that cost against the £836 average cost of a child tooth extraction and, for my money, I would rather put more focus on prevention. I want to see the English treated as well as other parts of the United Kingdom.

--- Later in debate ---

[Steve Brine]

I said that there is clearly a long way to go, and the hon. Lady also said that about Scotland. I am just putting it on the record that there are some positive stats; it is not a counsel of despair.

In explaining what I started to say, let me talk about the extensive work being led by Public Health England as well the wide range of activity nationally in reforming the dental contract, which a number of Members asked about, and locally, in initiatives such as “starting well” run by NHS England, which a number of people referred to. First, it is important that I, as the Minister, acknowledge the vital role that dentists play in this. They are a brilliant part of the NHS. There are just over 24,000 dentists currently providing NHS dental care and their commitment and contribution is vital to delivering our wider health and public health aims. Overall, access to NHS dentists continues to increase in England. In the latest figures for patients seen by NHS dentists, 6.8 million children were seen in the 12-month period ending 30 June this year, which equates to just over 58% of the child population. Looking at adults, this year’s January-to-March GP patient survey results showed that, of those adults trying to get an NHS dental appointment, 95% were successful.

Although those numbers are an encouraging start, clearly more needs to be done—I am not pretending that it does not—to reduce the inequalities in access and oral health that remain as a result. Nationally, Public Health England has an extensive work programme to improve oral health, particularly of children. Improving that and reducing inequalities in oral health is a priority for PHE, which I meet regularly. It was in the office just last week, when we discussed this subject. So many Members have mentioned the sugar levy, which addresses some of the root causes of dental disease.

[Catherine West]

Will the Minister give way?

[Steve Brine]

Yes—because she is smiling nicely.

[Catherine West]

May I make a brief intervention on the sugar levy? Will the Minister at least undertake to look at health trusts—that is directly in the gift of the Department of Health—and at what they are promoting by means of cabinets that sell sugary drinks and products?

NHS Pay

Catherine West Excerpts

Wednesday 13th September 2017 Commons Chamber

[Jonathan Ashworth]

My hon. Friend is right to raise that point. It is not just, which is why the Labour party has consistently campaigned to get rid of the cap. The Conservatives have voted against getting rid of it when we have brought motions on this issue to the House.

Given that the Government are now briefing that the cap is being abandoned, I trust that they will accept the motion in the name of the Leader of Opposition and myself and not divide the House later today. If they are indeed abandoning the cap, let us put them on notice that it must apply to the whole public sector, including the 55% of workers not covered by pay review bodies. We also put them on warning that we will not accept a divide-and-rule approach that plays one set of public workers off against another. Nor will we let Ministers get away with presenting below-inflation pay offers as amounting to a fair pay rise when that is still, in effect, a pay cut.

[Catherine West (Hornsey and Wood Green) (Lab)]

My hon. Friend is making an excellent beginning to his speech. What is his view of the impact of this crucial question on recruitment and retention in our hospital trusts?

[Jonathan Ashworth]

My hon. Friend is right to raise that point. I shall go on to explain that the pay cap is at the heart of the recruitment and retention crisis that is now facing the national health service.

--- Later in debate ---

[The Secretary of State for Health (Mr Jeremy Hunt)]

I thank the shadow Health Secretary for introducing this debate. NHS staff are doing a superb job in tough circumstances, and it is right for this House to debate whether we are giving them an appropriate level of support.

I start by addressing the areas on which we agree with the Opposition. First, it is incredibly important to have motivated staff, simply because motivated staff give better care to patients. It is critical for patient safety that we have enough staff in our NHS and social care system, so recruitment and retention matter. It is also true that, right now, it is very tough on the frontline for NHS staff as they cope with the pressures of an ageing population, of financial constraints that have not been as tough in many years, and of changing consumer expectations of what the NHS should deliver. We agree on all that, but there are some fundamental disagreements that I also need to surface.

The shadow Health Secretary talks about the former 1% cap and the pay restraint that we have indeed had for the last seven years, which his party frequently characterises as austerity—some ideological mission by the Conservatives to reduce the size of the state. [Interruption.] I can see some nods, but it is absolute nonsense.

I remind Labour Members that in 2010 we inherited the worst financial crisis in our history and the worst recession since the great depression. The shadow Health Secretary was an adviser to Gordon Brown in 2010—he does not talk about that very much—and he knows just how serious the crisis was. He uses the phrase “Tory economics,” but the 2010 Labour manifesto, which he may well have had a hand in drafting, wanted to cut the NHS budget. The Health Secretary at the time, Andy Burnham, said that it would be “irresponsible” not to cut the NHS budget.

In 2015, five years on from that terrible crisis, the Labour party wanted to put £5.5 billion less into the NHS than the Conservative party did. In short, the austerity that the shadow Health Secretary criticises today is austerity that Labour wanted to go much further with when it comes to the NHS. Labour needs to recognise that if we had followed its advice we would not even have been able to honour a 1% pay rise, we would not have been able to recruit 12,000 more nurses for our wards, we would not have record numbers of doctors and we would not have record funding for the NHS.

[Catherine West]

Will the Health Secretary apologise for the current dreadful state? We have thousands and thousands of nurse places, and hospital trusts are having to go as far as the Philippines to recruit student nurses. Student nurses are coming out of university with £56,000 fees. NHS recruitment and retention is in a deep crisis. Will he apologise?

[Mr Hunt]

What I will not apologise for is the dreadful short staffing on NHS hospital wards that we inherited in 2010, which led directly to the problems of Mid Staffs. Nor will I apologise for sorting that out and making sure that we have 12,000 more nurses on our hospital wards today than we had in 2010.

--- Later in debate ---

[Mr Hunt]

I agree with the right hon. Gentleman that when deciding policy on pay we absolutely have to look at the impact on recruitment and retention, and that if we are going to deal with the pressures of an ageing population in the way that he and I would both want, we are going to need to recruit many more doctors and nurses for the NHS over the years ahead.

The progress that we have made in the NHS in improving outcomes for patients, despite the huge pressure on the frontline, is possible because of the brilliant staff we have in the NHS. I want to recognise that pay restraint has been extremely challenging, which is why yesterday my right hon. Friend the Chief Secretary to the Treasury announced a new policy, allowing Departments flexibility where there are recruitment and retention issues, and where productivity savings can be found. We will also honour the commitment we made prior to yesterday’s announcement, which was that before we take any decisions we will listen to the independent advice of the pay-review bodies.

To value staff also means to look at non-pay issues as well. It means we should look at making sure that we are training enough staff, so that when hospitals have the budgets to employ staff, they are there for them to employ; it means we should look at flexible working—on which, frankly, the NHS can do a lot better—if we are to tackle the agency bill that the shadow Health Secretary spoke about; it means we should put in place measures to encourage nurses to return to practice, which is why Health Education England is increasing the number of return-to-practice training places to 1,250 from 2019-20; it means we should look at new support roles for nurses, such as the 2,000 nurse associates who are starting training this year; and it means we should look at new routes into nursing, such as the nurse apprentice route that we are opening this year.

[Catherine West]

rose—

[Rachel Maclean]

rose—

[Mr Hunt]

I am going to wind up my comments now, because lots of people wish to speak. [Hon. Members: “Oh!”] Okay, the House has persuaded me. I shall give way first to the hon. Member for Hornsey and Wood Green (Catherine West) and then to my hon. Friend the Member for Redditch (Rachel Maclean).

[Catherine West]

I thank the Secretary of State for his generosity in giving way to me twice. Will he look again at the issue of student bursaries? It is such mistake.

[Mr Hunt]

I assure the hon. Lady that we are making reforms because we want to train more nurses and to fund more nurse training places. There has been a dip in the number of people taking up nurse training places this year, as there was when the higher education reforms were introduced in 2012, but it recovered soon after that and we now see in other parts of higher education record numbers of students from poorer backgrounds going to university.

Contaminated Blood

Catherine West Excerpts

Tuesday 11th July 2017 Commons Chamber

[Mrs Hodgson]

I thank my hon. Friend for his intervention. The evidence on those things has been well documented, especially by the former Member for Leigh and my hon. Friend the Member for Kingston upon Hull North. Those who have lived with these conditions, who are brave enough to come forward—and who are at the sharp end of this heinous negligence and the recent uncovering reported in the Daily Mail last week—have proved just how important it is that a Hillsborough-style inquiry is set up.

[Catherine West (Hornsey and Wood Green) (Lab)]

Does my hon. Friend agree that the report, “Self Sufficiency in Blood Products in England and Wales” is unauthorised, and could be perpetuating inaccuracies and outright lies, as my constituent says in a letter to me?

[Mrs Hodgson]

All of this evidence will have to be examined. In recent days, constituents affected by this scandal have been in contact with my office with intricate details that must be addressed. It is important that those questions, no matter how small they may be, are answered, as they reflect the issues that have inextricably affected that person’s whole life. It is most important that those issues are addressed, so that those who have lived with the ramifications of this serious negligence can finally have the justice that they deserve.

Getting to the bottom of the allegations and the evidence and having a full and frank inquiry that brings justice for the many people affected are the reasons why we must have this inquiry. As the joint letter by the Opposition leaders said, if a panel were to be convened, it must disclose any and all documents related to the scandal, which involves the victims at every stage; and it must compel all parties involved to participate in the disclosure process and not to hinder justice any further. It must also investigate the events leading up to an individual’s infection and the aftermath, including allegations of medical details being tampered with, whether people were unknowingly tested for viruses without their knowledge and whether enough was done to identify those at risk of infection. As part of this inquiry, there must also be an investigation into the role of profit-making American firms, which supplied the blood factor concentrates to people with haemophilia.

Although none of this will bring back loved ones and those who have died as a consequence of this scandal, or change the life circumstances of those who are alive today living with these conditions inflicted on them, there is still something that we can do, which is to hold an inquiry. It is the very least that we can do. The thousands of people affected by this scandal must be supported and we must stand beside them in seeking justice, as that is our duty as elected representatives of the public.

I want to conclude with this final remark: none of us here has a magic wand—I know that our constituents think that we do—and we cannot turn back time and stop this scandal happening. Sadly, that power does not exist, but the power that does exist, at the behest of the Minister before us today, is that of facilitating the justice for those who live with the aftermath of this scandal. Here, today, we can send a message—a loud and strong message to those who campaign on this issue day in, day out—that Parliament has listened and is on their side. We in this House have heard them; we in this House are there with them; and we in this House will do all that we can for them in their quest for justice. We cannot let them down. We can help facilitate the truth once and for all. Parliament is listening to the individuals who have spent decades fighting against the system to get the truth that they seek, and the Government must listen to Parliament. Parliament is saying: fix this, provide those thousands of people who never asked for this to happen to them with the justice that they so rightly deserve. We cannot fail them any longer.

--- Later in debate ---

[Dr Whitford]

The Scottish Government set up the Penrose inquiry, but I would assume that any inquiry will look at the whole UK, and the Minister has committed to that. It must be remembered that the decisions that led to the scandal were taken here and in Whitehall. This was before devolution. Governments such as the Scottish Government have tried to step up to support citizens who have been affected, but getting the answers to what caused the situation is a matter for this place.

[Catherine West]

Does the hon. Lady agree that the lack of trust has been enhanced by documents such as “Self-Sufficiency in Blood Products in England and Wales”? That was a Department of Health document, but many people felt it was inaccurate and contained outright lies?

[Dr Whitford]

The inquiry will have to look at all those things. Documents, patients’ records, things that were altered and hidden, and things that are hiding behind public interest barriers now all need to be opened up so that light can be shed on the matter, as with Hillsborough.

Penrose was a Scotland-only inquiry. The Department of Health was invited to take part and turn it into a UK-wide inquiry, but it declined. One of the key weaknesses of the inquiry was that Penrose did not have the right to summon documents or people.

I remember when the scandal started to unfold in the ’80s. As a surgeon who was, of course, using blood on her patients, I remember how shocked I was at the mere thought that an action I might have taken could have harmed a patient I was looking after. In my elective surgery, I set about chasing every single blood cell to avoid spilling blood. I used electrocautery and all sorts of modern techniques. If I were to wheel out the staff from my theatre now, they would moan about how long I used to spend doing that. If a clinician is dealing with someone who has been hit by a bus, however, they have no choice.

I remember a critic of Penrose in 2015 saying that they were surprised that clinicians showed so much trust in the quality of blood, but a clinician who is using hundreds of drugs, implants, machines and blood products must be able to trust them. We have no mechanism personally to check them. That is the role of the Government and all their agencies. It is why we have licensing and inspections, and it is why action must be taken when there is a suspicion of harm. Failing to act, hiding and not dealing with the situation at the time all happened pre-devolution, and this inquiry must take account of that.

At a conference in Glasgow in 1980, clinicians were already raising concerns about changes in the liver function of patients who were receiving blood concentrate for haemophilia. A 1981 meeting of the UK’s Blood Transfusion Research Committee, which we have all read about recently, recognised that about 50 patients a year developed some form of liver damage. Yet the decision at that meeting appeared to be to let that continue and simply to study the situation, using those patients as a way of developing a test for what was known at the time as non-A, non-B hepatitis. It is important that we ensure that this inquiry looks at all this. The official from the Department of Health and Social Security who was at that meeting would not attend Penrose. Such people need to be called by this inquiry.

Going forward, the inquiry must include the families and the victims so that we are sensitive to what they want to know. This is also about not just the Government but producers—and not just producers in America. We try to make ourselves feel better by blaming this on the States, where people bought blood, and where people with addictions, people living in poverty and prisoners were used. In the mid-70s, prisoners in this country were also used, and it is claimed that that was encouraged by the Home Office as part of prisoner rehabilitation. We need the documents on that; we need to understand if that decision was made. UK producers have often been found wanting in the quality of product they came up with, so we must not pat ourselves on the back and imagine that the UK product was somehow safe and that this was all due to the US. We need to follow this right down and get the answers.

These people have been failed so many times, over and over, and it is crucial that that does not happen again. We need to keep the Government on their toes. We need to have reports back from this inquiry as it is set up, so that we know what it is actually going to look into. If we fail to get answers this time, and particularly if we fail to deliver compensation for the lives lost, the suffering, the failure to get a mortgage or insurance, and the costs of care, we will have failed these people all over again.