International Women’s Day

Debate between Vicky Ford and Jackie Doyle-Price

Thursday 9th March 2023 Commons Chamber

[Jackie Doyle-Price]

I actually have less sympathy with that point. I think we should all understand what standards of good behaviour are, and it should be intrinsic. Frankly, no teacher should be allowed in a classroom if they do not understand respect. It comes down to that ultimately, and I think all teachers should be equipped with that.

[Vicky Ford]

Will my hon. Friend give way?

--- Later in debate ---

[Jackie Doyle-Price]

I think the fact that the right hon. Lady and I are having a ding-dong about this, while we actually want the same outcome, illustrates just how badly that debate has taken place, because of the bookends of the 1861 Act and the 1967 Act. Again, it comes back to us all wanting better outcomes and a safe system for women. That should be our starting point, not those two pieces of legislation. We can probably strengthen the protections for women regarding coercion if we look at it in that way.

As usual, I like to use this speech to challenge ourselves about what we are not getting right for women. But I have not got until midnight on Sunday, so I will have to be a bit more limited in what I am able to tackle. However, I am pleased to have been able to say what I have about abortion today.

I also want to come back to the point, which the right hon. Member for Kingston upon Hull North made in her speech, about indecent exposure. I absolutely amplify her overall argument. To be honest, flashing is not seen as a crime. It has been totally normalised. I heard on the radio, just this week, that as many as 50% of women have been victims of that crime. I cannot emphasise enough that sexual violence is something that escalates, so the moment that some things are tolerated, that behaviour will only increase. Wayne Couzens is perhaps the best example of that.

This is where I come back to equality laws and advances that are meant to empower women. I want to talk about the whole issue of contraception. Yes, it has given women the opportunity to take control of their fertility and enjoy their sexuality, and all the rest of it, but it has also generated a culture in which men feel even more entitled, and where girls are feeling more and more forced to become sexualised beings, earlier perhaps than they are ready to. That is why I feel very strongly that we need to keep our safe spaces.

[Vicky Ford]

I would just like to point out to my hon. Friend—who I really value and who is saying some great things—that I do not think it is contraception that has led to many of the challenges that young women are facing today, especially more violent dangers and sex. The contraceptive pill has been around for 70 years, but the violence that women face today is also linked to pornography and other issues.

[Jackie Doyle-Price]

I am sorry, but my right hon. Friend is clearly not understanding what I am saying at all.

[Vicky Ford]

Sorry, have I missed the point?

[Jackie Doyle-Price]

Yes—well, she has had no sleep. The point is that we have a culture where girls are expected to be sexualised at an earlier and earlier age, and more and more of that behaviour is being tolerated. We have a situation where we have the growth of gangs, and we talk about boys stabbing each other, but we do not talk about the sexualised sharing behaviour that happens among those gangs.

Going back to my earlier point, that is why we really need to jealously guard our safe spaces. We have had this debate a number of times before, and, similarly to the abortion debate, we end up debating things on a very polarised basis when, actually we are talking about safety.

I was very concerned to read in Parliament’s gender guidance that the advice given to anyone, in regards to gender, is that people should be encouraged to use the facilities that they feel comfortable with. I then went on to read that, as part of the restoration and renewal project, 70% of our toilets will be gender-neutral, and the remaining 30% will be split evenly between males and females, so we will only have 15% of toilets, under that will be female-only.

At the risk of upsetting some of my male colleagues here—actually, I think some of them are not very comfortable with shared-gender spaces either, mainly because they do not find men’s toilets very nice, and are even more embarrassed to have to share them with women, if truth be known—it is important that women have their own spaces, so that we can maintain our privacy and dignity.

Again, that comes back to the point about indecent exposure, because those of us who jealously guard the need for women to have their own toilets and changing facilities are not scared of trans people; we are scared of male sexual predators. The truth of the matter is that a male sexual predator will use every tool at his disposal to get access to his victims.

Ultimately, this is a behaviour that none of us understands, but there are some men who are actually very proud of showing off their penises—God knows why, because they are not the best things to look at at the best of times. They love their penises so much that they want everyone else to see them. Well, we don’t.

For that reason, I will not apologise about continuing to maintain my defence of us having our own facilities that men, for whatever reason, will not have access to. We now have to work hard to establish that proper respect. While more than 50% of women are victims of indecent exposure, we have not reached the level of respect that every woman in this country deserves from their male counterparts. It is incumbent on all of us. I know we are mainly women here today in the Chamber, but I also say to my male colleagues here, thank you for being here, and please do your bit to ensure that we all enjoy that freedom as well.

Oral Answers to Questions

Debate between Vicky Ford and Jackie Doyle-Price

Tuesday 7th May 2019 Commons Chamber

[Jackie Doyle-Price]

Young people often fall out of care when they leave their home addresses to go to university. To deal with that transition, we extended the service to nought to 25-year-olds through the forward plan rather than cutting it off at adulthood. That will ensure that we can do more to achieve continuity of care.

I pay tribute to the efforts that universities have made. They have seized on the challenge posed by the increasing prevalence of mental health problems, and I will continue my dialogue with them.

[Vicky Ford (Chelmsford) (Con)]

The students union at Anglia Ruskin University—which is based in Chelmsford as well as in that other “C” place, Cambridge—carried out a big study on student mental health. One of its requests was for students to be able to register with two GPs, one at home and one at university, so that they would not be stuck without a GP in the holidays or in term time. Can we look at that again?

[Jackie Doyle-Price]

I will definitely look at it. As I have said, the transition poses real challenges, because of a process failure rather than any lack of willingness or commitment on anyone’s part. We must ensure that people retain access to services as they move around.

Phenylketonuria and Kuvan

Debate between Vicky Ford and Jackie Doyle-Price

Thursday 22nd March 2018 Commons Chamber

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

I thank my hon. Friend the Member for Cheltenham—

[Vicky Ford]

Chelmsford.

[Jackie Doyle-Price]

I am sorry—I ought to know it is Chelmsford because my hon. Friend is a near neighbour of mine, and I thank her for the passionate and articulate way that she made her case this afternoon. I am proud that it is I who am responding to her first Adjournment debate, because she and I go back a long way. I hope to give her some comfort from the fact that we are taking into consideration some of the issues she has raised today. I also thank the hon. Member for Strangford (Jim Shannon) who made an articulate pitch on behalf of the families of those who suffer from rare diseases. We must always remember that we are dealing not just with the person who has the condition, and that the burden on their family can often be as great, if not greater.

My hon. Friend has secured this debate on phenylketonuria and its treatment with Kuvan, and she set out some concerns on behalf of all PKU patients, which I hope to address. The importance of addressing rare diseases, of which PKU is one, is increasingly recognised by policy makers and healthcare service providers, not just in the UK but worldwide. Mercifully, the numbers of patients suffering from each rare disease can be small, but collectively 3.5 million people in the UK alone are affected by rare diseases. To put that number in context, 1 in 17 people will suffer from a rare disease at some point in their life.

The Government are dedicated to improving the life of patients with rare diseases, and that is laid down in our promise to implement the 51 commitments of the UK strategy for rare diseases, which includes the need to take account of new evidence that may emerge as a result of research and development.

Many rare diseases are present at birth or soon after and PKU is no exception. We understand that PKU has an estimated prevalence of one in every 10,000 births. We know that without treatment early in life the outlook for those born with PKU is very poor. Without appropriate treatment, as my hon. Friend outlined, people will develop severe learning disabilities which may lead them to require constant care. With treatment, however, the outlook can be good. Screening therefore has a vital role in early and accurate diagnosis. The current new-born screening programme in the UK is based on the blood spot, or heel prick, test and screens for nine rare conditions, including PKU. Treatment can then start straight away, minimising the risk of serious complications. As I understand it, for patients with PKU this treatment includes a special diet, confining intake to low protein food and regular blood tests, as my hon. Friend explained.

I recognise that this protein-restricted diet can be very limiting and particularly difficult for children to adhere to. Young patients with PKU cannot eat many of the enjoyable foods that we all eat each and every day, such as meats, milk, cheese and fish. That undoubtedly puts a strain on patients like Cait and their families—I am very pleased that they are here witnessing the debate today—and can make simple day-to-day activities such as going to school or meeting friends a significant challenge. I also appreciate the immense pressure it must put on parents and carers to deny a child the pleasure of choosing and eating a wide range of food on a daily basis.

We all understand the desire of young patients to live a regular life, and eat any food and not have to worry about consequences. However, because of the extremely limited number of naturally low phenylalanine foods available to PKU patients, mainly fruit and vegetables, they also need supplements to meet daily energy requirements, add bulk to their diet and increase variety. My hon. Friend outlined some of the protein shakes they have to rely on to do that. The availability of low-protein foods and nutritional supplements through the NHS is still very important and has, since its development by Birmingham Children’s hospital in the 1950s, saved the lives and improved the outcomes of many PKU patients.

Let me move on to address the specific point my hon. Friend made about Kuvan, which has been found to lower blood phenylalanine levels in some patients with mild or moderate PKU. As highlighted today and in previous debates, this drug is unfortunately only effective in some patients. It is entirely dependent on their particular genetic make-up and is more likely to benefit those with the milder forms of PKU. In those cases where patients respond to treatment with Kuvan, it means they are still likely to be required to continue with some form of dietary restriction.

NHS England currently has a policy on the use of Kuvan for the management of PKU during pregnancy. It is targeted at PKU patients who are not able to establish low levels through dietary control alone. Keeping mums-to-be safe is of great clinical importance to prevent maternal PKU syndrome and lifetime adverse consequences for their babies, the worry of which may further increase a mother’s anxiety around pregnancy and the worry about the developing baby.

The reason why Kuvan is currently not routinely commissioned for use in children and adults is the lack of evidence of its effectiveness on nutritional status and cognitive development at the time the policy was developed in 2015. However, if doctors treating a patient think they would benefit from treatment with Kuvan, clinicians are able to make an individual patient funding request, as my hon. Friend said. I appreciate that what my hon. Friend is asking for today is a bigger change than that, beyond access for an individual patient—namely, a wish to see a change to the commissioning policy on Kuvan for use in children and adults that respond to the drug. As I mentioned in my opening remarks, it is important to take account of new evidence and developments as they emerge. I am happy to report that NHS England has received a preliminary policy proposal for the use of Kuvan in the management of PKU for adults and children, as new evidence has now been published to support its use. That was considered by the clinical panel in January, where it was agreed that NHS England should undertake a further review. NHS England is now working with NICE to agree the best approach and has asked it to consider developing advice on the use of Kuvan. I hope that my hon. Friend accepts that this is a positive step in the right direction.

I also agree with my hon. Friend about the need for good stakeholder engagement. Taking stakeholder views into account is vital in any decision-making process. That will involve members of the public and patients, including Cait and her family, as well as all families this will have an impact on. I was very pleased to hear make the point about BioMarin, the manufacturer of Kuvan, being open to negotiation on the pricing of the drug. That is extremely welcome news. Indeed, as part of any review process, manufacturers will be able to offer a patient access scheme to NICE, and the price offered is then considered to determine the cost-effectiveness of a drug.

I hope I have reassured the House today that the discussion on access to Kuvan is actively being considered. The Department will follow the upcoming work by NICE and NHS England with great interest as they consider the impact of new evidence on commissioning policy. I emphasise that research is crucial to improving our knowledge of rare diseases and to working towards better treatment of them, and I am pleased that the UK is recognised as one of the leading countries for research into rare diseases. In July 2017, the chief medical officer published her landmark report, setting out a vision for genomic medicine in the UK.

The Government have accepted the report in full and responded with the establishment of a national genomics board chaired by my colleague, Lord O’Shaughnessy. I hope that this reassures my hon. Friend and the House about the Government’s commitment to supporting research, aiming to bring real change to the way we understand and treat rare diseases. We are in a fantastic position in the UK, at the forefront of that science, and our patients play a vital role in challenging us as policy makers, healthcare professionals and researchers to find new treatments for the benefit of all.

In conclusion, we will ensure that we harness the remarkable prospects that these new developments present for the benefit of our rare diseases patients. We will look more closely at Kuvan. NHS England and NICE will review the new evidence and will engage with BioMarin to consider whether Kuvan should be made available more widely.

I am very grateful once again to my hon. Friend for highlighting these issues. In closing, perhaps through her I can extend my very best wishes to Cait and her family as she battles with this disease.

Question put and agreed to.