Organ Donation (Deemed Consent) Bill

Vicky Ford Excerpts

3rd reading: House of Commons & Report stage: House of Commons
Friday 26th October 2018 Commons Chamber

[Vicky Ford (Chelmsford) (Con)]

It is a huge pleasure to be in Westminster today. I genuinely believe that the vast majority of people who stand for Parliament do so because they want to make the world a better place. I have to admit that on many days I wonder, when I sit on the train on my way home, whether we have actually achieved very much in that regard. Today, however, we have done three exceptional things.

The first Bill will enable tenants to take action against rogue landlords. It will make a real difference to the lives of many of my Chelmsford constituents. The second Bill will mean that mothers will have their names on the marriage certificates of their daughters, a step forward for equality that should have happened many years ago. It will also mean that anyone who wants to can join their partner in a civil partnership, which is so much the right thing to do. Finally, I am so proud to be here for this Bill on organ donation and a register. I know that lots of people, when they look at our proceedings, think that there are only a tiny number of Members in the Chamber. Actually, there are many, many more hon. Members in Parliament today just in case a vote is needed.

I would like to put on record my huge thanks to the hon. Member for Westminster North (Ms Buck), my hon. Friend the Member for East Worthing and Shoreham (Tim Loughton) and the hon. Member for Barnsley Central (Dan Jarvis), who have helped to drive these Bills through Parliament. As an Essex woman MP, I give huge thanks to my hon. Friend the Member for Thurrock (Jackie Doyle-Price) on the Government Front Bench, who as the Minister responsible has steered the Organ Donation (Deemed Consent) Bill. I also thank the other woman Essex MP, my hon. Friend the Member for Castle Point (Rebecca Harris), who is hiding behind the Speaker’s Chair right now—she has actually just come back—and who as Whip has been key in making sure there are lots of Members here to support the Bill.

I am pleased to support the Bill because organ donation saves lives. For many people, it is the only way their life can be saved, but the system needs changing. According to statistics from the British Heart Foundation, as of last Friday, 6,198 people in this country were waiting for an organ donor, and 285 of those were waiting for a heart transplant. The good news is that more and more people are putting themselves on the register, which is excellent, but the sad news is that it is not keeping pace with the number of people who need a transplant.

Eight out of 10 people in the UK support organ donation, but only one in three are on the register. We need to change that, especially for people from black and minority ethnic communities—one in five of the people who die while waiting for a transplant are from those communities—so I thank the Minister for the helpful toolkit in our inboxes today. It will help us as Members of Parliament to reach out to those communities and give them the necessary information and reassurance to encourage them on to the register.

[Will Quince (Colchester) (Con)]

My hon. Friend rightly references the very important toolkit, which will be useful in sharing information about this new policy with our constituents, but does she agree that for it truly to work we need to educate people about why the Bill is so vital?

[Vicky Ford]

I thank my other fellow Essex MP for his excellent point. Essex MPs get things done, as do we all.

I try to think about what has worked in other countries, and it is clear from other countries that an opt-out system makes a difference. As my hon. Friend points out, however, it must go hand-in-hand with information systems and improving the resources available to our excellent health service staff. That is key to ensuring best practice. In countries that have introduced an opt-out system as part of a wider package of measures, it is associated with an increase in the number of donations and lives saved.

I support the soft opt-out system, as it is called, under which family members can say that they do not want their love one’s organs used for donation. It is important that family members have that choice. I have been struck listening to family members who have made that difficult decision after losing a loved one—we just heard the beautiful example of the young lady whose heart went to Max—talk about how much pride and hope it has given them to find out that their loss has resulted in many other lives being saved. That said, it is important, where family members feel strongly that a loved one’s organs should not be used, that they have the option of that soft opt-out.

Having said all that, I believe that with a clear and detailed communications strategy following the introduction of the system, and with investment in the right health structures to give our outstanding NHS workers the resources they need, the Bill will make the world a much better place for many of our constituents. Thank you Mr Deputy Speaker, for making sure we all came here today to pass these Bills.

Oral Answers to Questions

Vicky Ford Excerpts

Tuesday 23rd October 2018 Commons Chamber

[Mr Speaker]

I call Vicky Ford.

[Vicky Ford (Chelmsford) (Con)]

indicated dissent.

[Mr Speaker]

The hon. Lady was standing. She has changed her mind. All right, never mind. We can always have another go later.

--- Later in debate ---

[Caroline Dinenage]

The hon. Lady is absolutely right to raise this matter. We are working closely with all the manufacturers of adrenaline auto-injectors to improve the supply situation as quickly as possible.

[Vicky Ford (Chelmsford) (Con)]

One in 10 mums gets post-natal depression, and we know that early identification is key to preventing it from becoming more serious. May I urge the Minister to look at the National Childbirth Trust’s campaign to ensure that all mums—as well as all babies—get a six-week check?

[Caroline Dinenage]

We are really supportive of the Hidden Half campaign, run by the NCT—my colleague the Minister met the trust last week. We must ensure that we are supportive of new mothers’ health needs.

Oral Answers to Questions

Vicky Ford Excerpts

Tuesday 24th July 2018 Commons Chamber

[Steve Brine]

The truth is that we work together. In July 2017, the Government published a comprehensive new drugs strategy, setting out what we think is a balanced approach that brings together the police, health, and community and global partners to tackle the illicit drugs trade, and to protect the most vulnerable in our societies who are struggling with drug dependency and help them to recover and turn their lives around. I know the hon. Gentleman takes a very different view, but that is our approach.

[Vicky Ford (Chelmsford) (Con)]

My nine-year-old constituent is currently having up to 400 epileptic seizures every week, and his family believe that medicinal cannabis may be beneficial. Will my hon. Friend update the House on what progress is being made regarding the use of medicinal cannabis for epilepsy sufferers?

[Steve Brine]

Obviously, our thoughts are with my hon. Friend’s constituent. A two-part review is going on. In the first part, the chief medical adviser considered the evidence available for the medicinal and therapeutic benefits of cannabis-based medicinal products, and found conclusive evidence of the benefits of those products. Part 2, which will be led by the Advisory Council on the Misuse of Drugs, will provide an assessment, based on the balance of harm and public need, of whether we need to do anything regarding the misuse of drugs regulations. While the review is under way, we have established, as an interim measure, the expert panel of clinicians to advise Ministers on any licence applications from senior clinicians, which helped Alfie Dingley, for example.

Phenylketonuria: Treatment and Support

Vicky Ford Excerpts

Tuesday 26th June 2018 Westminster Hall

[Liz Twist]

I absolutely agree. I hope that one of the good things that will come out of this debate is that the buck stops being passed, and the assessment gets done as quickly as possible. It is so important for people to have access to this drug; we need that to be sorted.

There is evidence that for a significant proportion of people with PKU—about 25% —this drug can significantly improve their condition. It does not cure it, but it does make it much easier to deal with the dietary issues, which have such an impact on the way people live their lives. Despite the drug having been around for so long, NHS England has only recently considered it for the management of PKU. The drug has now been referred to NICE for assessment and technology appraisal. The APPG on PKU recently heard from NICE about the process, but there is concern about the timescales and how the benefits of the treatment will be assessed. Understandably, there is huge frustration on the part of the PKU community that there are children and adults who could be benefiting from Kuvan now, and there is substantial evidence to support its benefits.

There is a particular issue about prescribing Kuvan for pregnant women with PKU, who can understandably find it hugely difficult to control their diet, and who fear the effect of any problems on their unborn child. While there is a 2013 commissioning policy in place that allows Kuvan to be prescribed to some pregnant women, it can be difficult for women to be prescribed it in a timely way.

Some people, some of whom are in this room, have had access to Kuvan through individual funding requests, or on a trial basis. Those people have found real benefits from the drug. My constituent Archie, who is here, started on the treatment earlier this year. Archie tells me he has benefited from having Kuvan, not just because his diet is now much less restricted and he is able to do what many of his school mates do, but because it has improved his energy and his life. As his mum Barbara said to me, “If we had been coming here before the treatment, we would have been bringing our own special breakfast for Archie to eat in the hotel, and would have had to watch everything he ate very carefully. It has made a real difference.” I hope that the Minister will be able to assure us that the assessment of Kuvan will be done very quickly, and that it will be available to the people it can help.

[Vicky Ford (Chelmsford) (Con)]

I congratulate the hon. Lady on securing this important debate. Kuvan, the brand name for sapropterin, is clearly deeply beneficial for about 20% to 30% of sufferers. I met the manufacturers last week, and they told me they had written to NHS England twice to ask for meetings to discuss price, but they are still waiting for a response. Will she join me in urging the Minister to use all his best offices to ensure that that meeting and the price negotiation can go ahead?

[Liz Twist]

I certainly do join the hon. Lady in that wish. I too have met BioMarin, which says it is prepared to negotiate significantly on the price, but we need to get in there and ensure that it happens quickly.

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[Vicky Ford (Chelmsford) (Con)]

Thank you, Mr Robertson, for the opportunity to speak in this important debate. I add my congratulations to the hon. Member for Blaydon (Liz Twist) on securing it. I speak as a chair of the all-party parliamentary group on rare, genetic and undiagnosed conditions, but also on behalf of my constituent Cait, and other constituents who suffer from PKU. I was very honoured to lead an Adjournment debate on this condition in March. I will not repeat everything that I said then, but I want to add some points.

PKU is a very rare condition, affecting about one in 10,000 people, but it is not ultra-rare, and that is part of the problem. Living with PKU is extraordinarily challenging, but for the 20% to 30% of sufferers who react positively to the drug sapropterin, there is a glimmer of hope. That is only about 150 children in the UK, and about 350 people in total, but for them, sapropterin is life-changing. Sapropterin is available in Austria, Belgium, Bulgaria, the Czech Republic, Denmark, Estonia, France, Germany, Hungary, Italy, Latvia, Lithuania, Luxembourg, the Netherlands, Norway, Portugal, Romania, Russia, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey and Ukraine, as well as in the United States. However, except for a small number of people—truly exceptional cases—and women during pregnancy, it is not available in England on the NHS, and that must change. It should be available for all those who would benefit, not just those who cannot stick to the diet. Those who do stick to the diet should not be excluded for good behaviour.

I understand that NICE sometimes has a very challenging time in considering whether to approve drugs that can be very expensive, but sapropterin does not fall into that category. In my Adjournment debate, I pointed out that when the broader economic benefits of prescribing PKU are compared with the costs of not doing so, the pure financial calculation alone suggests that it may even be financially beneficial to the public purse to prescribe the drug. Furthermore, as I stated back in March, BioMarin, the manufacturer, told me that it was willing to make a substantial reduction in the price. During that debate, the Under-Secretary of State for Health and Social Care, my hon. Friend the Member for Thurrock (Jackie Doyle-Price), suggested that a patient should go down the individual funding request route, but I understand that only one child has ever managed to receive the drug by that route. It simply does not work for the patients who need it.

I have written to the Under-Secretary of State for Health in the House of Lords a couple of times and I am grateful for his responses, but in his latest response, he suggests, in relation to the approval process, that the drug has now been prioritised for potential guidance development through NICE’s technology appraisal programme. Both patient stakeholders and the manufacturer are really concerned that that could lead to even more delays. BioMarin tells me that it has written twice to NHS England, offering to meet to discuss price. It wants to negotiate on price; it wants to make a generous offer, but its letters have apparently not been responded to. The decision needs to be made. It should not need 21 Members of Parliament standing here in Westminster Hall to get this drug for 150 children.

Looking at the broader picture, there is a fundamental problem with NICE’s commissioning programme. It works well for common conditions, and the highly specialised technologies process seems to work well for ultra-rare conditions, but conditions such as PKU fall through the gap. We need to find a way to get modern, personalised, specialist medicines to those who need them, where their condition is rare, but not unique.

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[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.

[Vicky Ford]

Will the Minister give way?

[Steve Brine]

No, I will not. Although the decision taken by NHS England was not to commission Kuvan routinely, the system has the flexibility to review that decision if new evidence emerges. As the House heard during the debate in March, NHS England received a preliminary policy proposal for the use of Kuvan in the management of PKU for adults and children, because new evidence has now been published to support its use. Kuvan was subsequently referred to the National Institute for Health and Care Excellence for assessment through its topic selection process—the process through which NICE prioritises topics for appraisal in its technology appraisal or highly specialised technology programme.

The NICE process is important. It is independent of Ministers and provides a standardised, governed procedure to ensure that NICE addresses topics that are important to the patient population, carers, professionals and commissioners and, similarly, helps to make the best use of NHS resources. To update the House on progress, Kuvan has progressed through the first stage of the topic selection, and NICE is currently considering whether the drug should proceed to the draft scope creation stage. We are expecting that decision to be taken in the autumn. I will press NICE, along with the relevant Minister in the Department—the Under-Secretary who sits in the other place—to bring that to a conclusion as swiftly as possible.

People have asked today for me to personally get involved in access to Kuvan. NICE’s process is important and sits independently of Ministers. It would be a very strange situation if Ministers were able to sit in the Department of Health and, like a Roman emperor, give a thumbs up or thumbs down. I do not think that any Minister in this Government or previous Governments would want to be in that inappropriate position. As I said, we expect the decision to be taken in the autumn and we will press for that to be brought to a conclusion as soon as possible.

I will give the hon. Member for Blaydon time to wind up the debate, but let me say first that there are other promising treatments on the horizon. NICE is currently considering pegvaliase, an enzyme substitution therapy indicated for adults, through its topic selection process, and recently consulted stakeholders on its suitability for the technology appraisal. I can update the House that a scoping workshop on this topic is scheduled to take place tomorrow, 27 June.

Finally, my hon. Friend the Member for Chelmsford said that there had not been a response on BioMarin. She mentioned that point to me last night, and I am worried to hear it. As I said, Kuvan is currently going through the independent NICE assessment. If the topic goes ahead, there will be many opportunities for BioMarin to engage in commercial discussions, as per NICE’s usual process. BioMarin and NHS England are already in discussions about a number of other drugs, so it has the opportunity to raise the issue. However, it seems to me that NHS England could at least communicate better, because no answer sounds like a bad answer. I will take that away from the debate and ensure that it happens ASAP.

I know you want me to stop, Mr Robertson, and let the hon. Member for Blaydon close the debate, so I will do that.

Oral Answers to Questions

Vicky Ford Excerpts

Tuesday 19th June 2018 Commons Chamber

[Mr Hunt]

I thank the hon. Gentleman for his private Member’s Bill. Palliative care is something that we do well in the UK—thanks, a lot, to the brilliant hospice movement—but we can do a lot better. I know that this will be an important part of the NHS plan.

[Vicky Ford (Chelmsford) (Con)]

Stroke is the fourth largest single cause of death in Britain. What action are the Government taking to prevent stroke and to raise awareness? And will the Minister meet me to discuss my GP surgery at Sutherland Lodge?

[Steve Brine]

Two for the price of one. Up to 70% of strokes are preventable if hypertension, atrial fibrillation, diabetes, cholesterol and other lifestyle factors are detected and managed earlier. The current national stroke strategy came to an end last year, so we are working closely with NHS England and the Stroke Association on a new national plan, which I hope to publish this summer.

Education (Student Support)

Vicky Ford Excerpts

Wednesday 9th May 2018 Commons Chamber

[Vicky Ford (Chelmsford) (Con)]

The hon. Lady is making a very powerful point, but we need to be very focused with our intervention. I represent an area that has a nursing school. Although applications have dropped, we still have five applicants for every place and 30% more qualified applicants for every place, so if we are to take measures, we need to make sure that they are very targeted in the areas in which we intervene.

[Angela Rayner]

I absolutely agree that we have to make sure that we target interventions and make sure that they work, but part of the reason I have brought the motion before the House today is that the interventions are simply not working. Since 2017, we have 700 fewer students training to be nurses, so the impact is absolutely clear, and I hope that Government Members will support our motion.

Some universities are even looking at closing down specialist courses entirely. If today’s regulations pass, there is every reason to believe that this will get worse. Nearly two thirds of postgraduate nursing students are over 25, more than a quarter are from ethnic minorities and 80% are women, so the impact of today’s regulations will surely be even worse than the previous cuts. Even if the Government are determined to make the change, there are good reasons not to make it now. This policy would move postgraduate nursing students over to the main student finance system, which means dealing with the Student Loans Company.

There is every reason to believe that the Student Loans Company is not yet ready. In recent weeks, the Government have been dealing with an error by the company that has led to 793 nurses being hit with unexpected demands to repay accidental overpayments they were unaware of. The Government’s response was a hardship fund of up to £1,000 per student, yet the Minister for Universities, Science, Research and Innovation, the hon. Member for East Surrey (Mr Gyimah), admitted in a written answer to my hon. Friend the Member for Blackpool South (Gordon Marsden) that the majority of students were overpaid by more than £1,000 and will be left short. Perhaps when he responds, the Minister will tell us how he can possibly expect nursing students affected by this policy to have any faith in the system they will be stuck in.

With the Government finally embarking on their flagship review of higher education, they could have allowed this issue to be considered as part of the review before going ahead with this change today. Ministers have insisted that this change is necessary now to make how we fund training sustainable, yet there is little reason to believe that it will achieve this. The average NHS nurse earns just over £31,000 a year and the average graduate now leaves university with £50,000 of debt. A new nurse with a postgraduate qualification will take 86 years to repay their undergraduate debt on the average NHS salary—that is before we add interest—which is nearly triple the current repayment period before debt is written off, meaning they will not even begin to repay the debt. How many postgraduate students affected by this policy will repay any of, let alone all, their additional loan, and how much of that debt will simply be written off by the taxpayer in decades to come?

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[Stephen Barclay]

I am grateful for that support from the Chair of the Health Committee. Having spent four years on the Committee myself, I know the value that members of Select Committees bring to the House. The Health Committee, particularly under her chairmanship, is hugely valued in the Department. The mitigation package that has been put before the House tonight reflects the constructive engagement that we have had with the Committee. We realise the importance of having consistency between undergraduates and postgraduates, and of expanding the supply of places, but it is also important to recognise that there might be specific areas in which there are recruitment challenges, and that targeted action to mitigate those challenges is appropriate.

[Vicky Ford]

I thank the Minister for the announcement that he has just made. At the nursing college in Chelmsford, and also at Cambridge and Peterborough, we have 30% more qualified applicants, but there have been fewer applicants for mental health nursing. This targeted intervention will really help to address that need. Will he confirm that this will be locally based where necessary—that is, in the areas where we need the help most?

[Stephen Barclay]

I am happy to confirm to my hon. Friend that there will be a local element to the targeting of the package. She has been a powerful advocate in helping to secure the new medical school at Chelmsford, which will be a huge boost to the local health economy.

The statutory instrument before the House tonight is part of package being brought forward by this Government, alongside the “Agenda for Change” increase in pay and alongside our ambitions to increase the number of apprenticeships and to encourage people to return to the profession. We have already made this change for the much bigger population of 28,000 undergraduates, and it is right that we should now apply that consistently to the 2,500 postgraduates. We have a targeted measure of support to address any hard-to-recruit areas, and I therefore commend this statutory instrument to the House.

Health Services in Essex

Vicky Ford Excerpts

Tuesday 17th April 2018 Westminster Hall

[Priti Patel (Witham) (Con)]

I beg to move,

That this House has considered health services in Essex.

It is a pleasure to serve under your chairmanship, Mr Howarth. I am grateful to the Speaker for granting me this debate. I thank the Minister for his time, and I welcome him; I suspect that he may already be familiar not just with the great county of Essex but with many of the issues I will give an airing to. I am grateful for this debate and for the opportunity to raise a number of issues that I have discussed previously in the House relating to health services in Essex.

Before I go into the details of the way in which health services are working in my constituency and where improvements are needed, I pay tribute to the NHS staff who work tirelessly to save lives and help people to get better—not only my constituents but constituents across the county. I have naturally visited our local hospitals and general practitioner surgeries and had the privilege of joining our ambulance service at both its headquarters and its new base. I have been impressed with the staff I have met and I pay tribute to them. They have obviously had a great deal on with the winter pressures. I also pay tribute to the staff and leadership I have met in the local NHS, and to the Government for investing in our NHS.

I say that because, since I was elected in 2010, it is fair to say that we have had a number of issues. In that general election of 2010, the Labour party was talking about cuts to the NHS. Ever since then, it has sought to weaponise the NHS and to frighten and scare my constituents and the public about local service provision and the services available to them. The Conservatives in government have invested in the NHS, and the result, in Essex, is more patients being treated by more doctors and nurses.

I welcome in particular the recent announcement, of which the Minister will be aware, of investment in Anglia Ruskin University’s school of medicine, which will provide training places for 100 more people. My fellow Essex MPs, in particular my hon. Friend the Member for Chelmsford (Vicky Ford), and I made strong representations in support of the university’s bid.

[Vicky Ford (Chelmsford) (Con)]

I join my right hon. Friend in praising the new school of medicine to train the next generation of doctors in Chelmsford. I heard from the vice-chancellor last week that more than 400 people have already applied to be among that first intake of 100. Does she agree that investing in the next generation of doctors, especially GPs, is crucial to delivering better health services in the future, and that giving our bright young Essex kids that opportunity is key?

[Priti Patel]

My hon. Friend is absolutely right. I will come on to the primary care side and GPs, because we face strong pressures on GPs, especially in relation to succession planning.

I also welcome the new investment to support the transformation and improvement of hospital services, including £69 million to support the Colchester and Ipswich merger. The NHS in Essex has also done remarkably well in cutting enormous swathes of bureaucracy. When I first spoke in Parliament about the NHS, I highlighted the enormous growth in the number of bureaucrats and managers in the primary care trusts and strategic health authorities under Labour, which took precious resources away from the frontlines. We need only go back to some of the records and even some of my own comments in this House to see the horrific numbers. Hundreds of millions of pounds were spent just on recruiting managers. We should be pleased that that bureaucracy has now been cut out, but there are challenges in the NHS that need addressing.

My constituency is served by two clinical commissioning groups, Mid Essex and North East Essex. The two hospital trusts are Mid Essex, which runs Broomfield, and the Colchester Hospital University NHS Foundation Trust, which is about to merge with Ipswich. The recently established Essex Partnership University NHS Foundation Trust provides mental health services, and we have the East of England Ambulance Service NHS Trust, which has also seen enormous change over the last seven to eight years.

Representing a constituency in the east of England, my hon. Friend the Minister will be familiar with some of those challenges. My constituency does not have a hospital of its own, but he will be relieved to hear that I am one Member of Parliament who is not calling for a hospital in my constituency. Colchester general hospital provides acute services to residents in the north-eastern part of the Witham constituency, and Broomfield hospital in Chelmsford provides acute services to residents in the rest of the constituency. Some services are provided in Braintree community hospital, but in Witham town itself and the whole constituency there is no NHS hospital and no significant out-patient service, just GP practices.

My part of Essex received no significant investment under Labour—a point worth labouring, particularly in light of the points I made earlier on. We now need new investment to meet the growing demand brought by a population increasing in age and in numbers. The area I represent is increasing in population and, in terms of demographics, the proportion of the population aged over 60 is increasing and the number aged over 85 will double. Across Essex as a whole, the proportion of residents aged over 65 is now 21%, higher than the 16% national average, which naturally adds pressures to health and social care services.

The three local planning authorities that cover parts of the constituency are Braintree District Council, Maldon District Council and Colchester Borough Council. Local plans adopted by those councils or going through public examination could add a total of at least 37,000 new dwellings by the early 2030s. In Witham town the population of 26,000 is set to grow by 20% over the next 20 years, and sites have rightly been identified in the town that will accommodate more than 2,000 dwellings, but the increases in population seen in recent years have not been matched by proportionate increases in the health economy. As a result, there are naturally strains on primary care.

Branch surgeries in Tolleshunt D’Arcy and Birch have closed. In both instances, leases on premises were expiring and, even though the local community proposed alternative options to maintain some GP coverage in those villages, a solution could not be arranged. Notification of closure plans was made fairly late, which limited the time available to find a solution. I encourage the Minister to review how branch closures are managed and to ensure that sufficient time and effort is put into finding alternative facilities to provide a regular GP presence, particularly in rural locations.

The Sidney House Surgery in Hatfield Peverel is one the Minister may know about, since we have corresponded over it. It is full and over-subscribed, yet as new development is planned for the village the NHS simply asks for a sum of money for capital improvements based on a mathematical formula, which has no regard for the real costs involved in upgrading GP services to meet demand. Ultimately, that means that developer contributions will either be used elsewhere in the NHS or not used at all and returned.

In Tiptree, a growing village that the Minister may know of because it is where the world-famous Wilkin & Sons is based, we can see what happens when housing growth is simply not matched by new GP provision. The ratio of patients to GPs is over 3,500:1, which leads to severe difficulties with patients waiting for appointments. In fact, not a day goes past when I am not contacted by a constituent in that village highlighting some of the pressures on waiting times and the difficulty in making appointments.

I hope that the Minister will consider how the NHS can secure developer contributions that genuinely reflect the costs involved in delivering new GP provisions that are relative to local needs. This is a really important point. We are not against growth in our villages—we understand that they need to grow—but it increases pressures, and our GPs and local surgeries must be supported in planning that growth in this part of Essex with existing communities, because they need to be confident that investment will be provided to ease the pressures that they experience.

We also need to see action on expanding hours so that people can access GP services, and on reducing the number of vacant GP posts in the county. That is why a new university is vital; it will help in securing and training GPs to fill those vital posts—succession planning, as I like to call it.

With the Witham constituency, and indeed Chelmsford, being part of the London commuter belt, it is difficult for people who work or who have caring commitments to children or elderly relatives to make GP appointments for early on in the day. New investment to support longer GP hours and seven-day access would be welcome, including more primary care access funding. This part of Essex is always open to any new pilots or initiatives to deliver the Government’s ambitions on improved GP access.

I am sure that the Minister has heard of my campaign for a new multi-purpose healthcare centre to be built in Witham town. I have already mentioned that Witham is a growing town. It is a great place to live and a fantastic place for many of the new housing developments that we are seeing. It is a commuter town. New healthcare services, including primary care, are vital. A new facility would ease burdens, which we of course want—particularly with the population growth that we are seeing.

The national average ratio of patients to GPs is around 1,700:1. The average in mid Essex is around 1,800. In Witham town, we have four surgeries and more than 30,000 registered patients covered by only 13 full-time equivalent GPs. That gives a ratio of 2,300—a third higher than the national average. The pressures are pretty stark and clear, and residents who are seeing new homes built obviously want to see this new centre built.

Our district council is being supportive and making funding available. Mid Essex CCG has put resources in place to develop a business case, and to its credit is working with me and all stakeholders to deliver the centre. We are now at the final hurdle. We want to get all GPs on side and ensure that they are all signed up so that we can get bricks on the ground. It would be helpful if the Minister and the Government backed the project, which would also give all local GPs the confidence to sign up to the healthcare centre.

I will quickly raise two other issues. First, on mental health services, the Minister will be aware of the situation with Essex Partnership University NHS Foundation Trust, which was established last year from a merger of two separate mental health trusts covering north and south Essex. Some legacy issues have recently been well documented in the media, but I have a constituent, Mrs Melanie Leahy, who lost her son, Matthew, in the most tragic circumstances while he was being treated by the trust. I have raised this case over a number of years, and the Government will know all the background to it. Police inquiries are being made into his death and into several other deaths as well. I urge the Minister to keep the historical cases under review, so that affected families are supported, we learn from past mistakes and robust action takes place where there has been neglect.

Winter led to unprecedented demands on the East of England Ambulance Service. Five years ago the trust suffered from poor leadership, but I pay tribute to everybody in the ambulance trust. It has been an absolute privilege to meet the paramedics in Witham and on the frontline who every day do amazing and brilliant work. The events of the winter remind us that the pressures are severe. The county council has helped with reducing pressures on social care and getting people out of hospitals and living independently back at home. I would welcome some words from the Minister on the action that the Department is taking to support our quite remarkable East of England Ambulance Trust to improve preparations for future winters and to give it the support that it needs.

Finally, although reforms, working practices and innovation have really helped to reduce pressures in the NHS, it is fair to say that, when it comes to funding, Essex has been historically underfunded compared with other parts of the country, which is down to challenging and changing funding formulae. I welcome the great deal of work undertaken by the Department of Health and Ministers to review funding, but I want to see more support, more reform and more investment in greater performance. Better performance should be rewarded through investment. I hope that the Department and the Minister will work with me to secure local funding and to secure a new facility in Witham. I thank the Minister for the time and attention he has given to discussing healthcare in Essex.

Phenylketonuria and Kuvan

Vicky Ford Excerpts

Thursday 22nd March 2018 Commons Chamber

[Vicky Ford (Chelmsford) (Con)]

I would like to bring to the House’s attention the condition known as phenylketonuria and the drug sapropterin, which is known under the trade name Kuvan. I very much thank my hon. Friend the Member for Spelthorne (Kwasi Kwarteng) for being here today; he raised the same matter in an Adjournment debate six years ago. I also thank the Minister—another fantastic Essex MP—for being present, as well as the hon. Member for Strangford (Jim Shannon), who has a constituent with the condition. I co-chair the all-party group on rare, genetic and undiagnosed conditions, but I raise this issue primarily as a constituency MP.

This is my first Adjournment debate, and I would like to discuss the case of one of my youngest constituents. It was at one of my first constituency surgeries that I met Natasha Cotter, who told me about her daughter, Cait. Cait and her father are in the Gallery. Cait has phenylketonuria, otherwise known as PKU. It is very, very rare.

I am sure that all of us who are parents remember those first moments when we hold our new-born baby in our arms before it is taken away and given the heel-prick test. For the vast majority of children, that test is clear, but for one in 10,000 babies, it will show that the child has PKU. Without treatment, these children can become very suddenly and very seriously ill.

People with PKU cannot metabolise phenylalanine, an amino acid found in protein. Without correct treatment, the amino acid can build up to levels that are toxic to the brain. If PKU is unmanaged, it results in severe and irreversible brain damage. The treatment for children affected is to remove almost all natural protein from their diet.

My constituent Cait is 10 years old. She can metabolise only 11 grams of protein a day. She is restricted in every eating experience of her life. Her day is ruled by limited food and constant protein supplements—those drinks taste foul and smell unpleasant. When other children are sharing a meal, or perhaps a birthday cake or chocolate, Cait can only have her protein drink. Her parents tell me that she is permanently hungry. They say that every day since she was born has been filled with the joy that she brings, but also the misery associated with the daily management of her lifetime condition.

The severe restrictions of a PKU diet place a great burden on patients and their families. The phenylalanine content of all food needs to be carefully restricted, including with vegetables such as potatoes and cauliflower. Cait’s grandmother has given up work to care for her. In fact, research shows that more than half of the carers of a child with PKU have stopped working, reduced their hours or changed their job so that they can help to manage the child’s diet. Unsurprisingly, the constant worry about what their children are eating, and whether brain damage may be caused by everyday food, puts a huge emotional strain on families. A recent study found that 59% of mothers caring for PKU children had clinical levels of psychological distress themselves. Furthermore, problems with learning difficulties are frequently reported in children with PKU. A survey of families found that 43% of children had problems staying focused at school, with 30% of families reporting that their child had depression or anxiety.

But there is hope. For one month, Cait was put on a trial of sapropterin, a drug made by BioMarin and marketed under the name Kuvan. During that trial, Cait’s ability to metabolise phenylalanine increased threefold from 400 mg to 1,200 mg a day—the equivalent of 24 grams of protein—which allowed Cait to eat a normal vegetarian diet. Her parents told me that she was a different child and so happy to be able to eat real food. Even a visit to the supermarket was a real adventure. Her mood lifted, the nightmares stopped and she increased in alertness. Her teacher asked what had changed, because she was a different pupil at school.

Sapropterin is the only licensed non-dietary treatment for PKU. It does not work for all genetic variants of the condition, but it benefits about 20% to 30% of sufferers. That is a tiny number of people: about 150 children in the whole country, or, including adults, fewer than 350. These people are so rare, but for those such as Cait, the drug is life changing.

Sapropterin is available in Austria, Belgium, Bulgaria, the Czech Republic, Denmark, Estonia, France, Germany, Hungary, Italy, Latvia, Lithuania, Luxembourg, the Netherlands, Norway, Portugal, Romania, Russia, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey and Ukraine, as well as the United States of America. However, except for a small number of women during pregnancy, it is not available in England on the NHS.

I have written to the Secretary of State for Health and Social Care to draw Cait’s case to his attention. I have also written to my local NHS clinical commissioning group, which sent me to NHS England. NHS England recommended an individual funding request, but for such a request to be successful, the patient has to be considered exceptional. So far, only those with additional conditions have been able to access the drug via that route. The patient has to prove that they have PKU and another condition, but how likely is that? PKU children are exceptionally rare—there are only 150 of them in the country—so they are already exceptional. For patients such as Cait, this is an impossible barrier. In fact, I have been told that only three patients have ever successfully managed to be prescribed the drug through an individual funding request.

Last summer, NHS England said that it would review the decision on sapropterin. Last month, it wrote to the patient organisation, the National Society for Phenylketonuria, to say that the decision would now be made by the National Institute for Health and Care Excellence. Last week, the patient organisation wrote back to NHS England because it is not clear what process will be used or when the decision process will begin.

I understand that funding for all treatments is not unlimited and that decisions do need to be made in a rational manner, but patients with PKU believe that, as well as the positive health benefits, there would be positive financial benefits to the public purse from commissioning this drug. The NHS estimates that Kuvan could cost between £14,000 and £45,000 per patient per year, but BioMarin, the manufacturer, has told the patient organisation that it is willing to make substantial discounts.

Furthermore, the price needs to be weighed against the costs of not having the drug. For adults, the protein-restricted diet alone costs the NHS £12,000 a year. The average cost to the taxpayer of each parent who gives up work to care for their child is another £5,500. A third of children need additional help at school, the cost of which varies, but the typical notional budget for a child with special educational needs is another £6,000.

[Jim Shannon (Strangford) (DUP)]

I am not normally in the Chamber for the Adjournment debate on a Thursday afternoon, but I am here today because of the timing of this debate and because, as my party’s spokesperson on health, I am very interested in this subject. The hon. Lady has very passionately, and in a forensic and detailed way, outlined the case for making this drug available. Not only does the individual need the drug, but the family sometimes need it as well, because of the mental and physical impact the situation has on them. I support the hon. Lady’s request that the Minister makes this happen. For 150 people, it is a small price to pay. As the hon. Lady said, when we add it all up, the good health of a child or an adult is worth such a price.

[Vicky Ford]

I thank the hon. Gentleman very much for his comments. I completely agree that we need to look at the wider issues. In fact, we should also look at what happens if the condition is not successfully managed, because that can be even more expensive. For example, if a woman with PKU gets pregnant and the condition is not well managed, the child she bears will be at very high risk of having substantial long-term disabilities. If a child with PKU does not manage to stick to their diet, they are at risk of permanent brain damage. All those wider costs should be taken into consideration when making this assessment.

The patient organisation is concerned that NICE may decide to restrict the drug and offer it only to those it considers to be high-need patients. The drug might be given only to patients who have refused to follow the strict diet, so it would actually discriminate against those who have done the right thing and worked so hard to maintain that very difficult dietary control. I say to the Minister: let us to try to break this deadlock. BioMarin and NICE need to engage with each other in a transparent way that has the full support of the patient organisation. The whole patient population should be considered, and those who do the right thing with their diet should not be put at a disadvantage.

There is a bigger issue. This is not just a debate about one patient or one drug, but a wider one about how we in Britain approach new medicines and treatments, especially for rare diseases. Britain is a world leader in science, especially the life sciences, and we are home to the human genome campus. The amazing, visionary 100,000 genomes project has set us at the forefront of the global revolution in medical research. Our unique NHS gives researchers the ability to access large quantities of reliable and detailed patient data, which helps them to identify very, very specific genetic divergences. That means that medics can increasingly pinpoint the exact cause of a rare condition, and discover specifically which one of a new generation of personalised medicines will give the most effective treatment for an individual’s condition. Life sciences lie at the heart of the Government’s industrial policy. However, if we are to stay at the forefront of world medical research, it is vital that discoveries are not only made here, but trialled, tested, and prescribed here.

NICE is a world leader in assessing medical health technology, and many other countries have chosen to follow its approach. Nevertheless, the world of medical research is changing exponentially, and if NICE is to continue to hold the confidence of researchers, physicians and patients, it must prove that it can evolve and evaluate even the most innovative treatments, and especially advanced medicines such as cell and gene therapies. When NICE approves a new treatment, we must ensure that the NHS can commission it effectively. Today the NHS cannot commission a drug unless it has been to NICE. Before a drug is granted marketing authorisation, there is the option for the company to make it available through the early access to medicines scheme, but after that marketing authorisation, and before NICE approval, there is no route to funding except through individual funding requests.

As the Minister knows, most rare diseases are very, very rare—at least some of them are—and the overall cost of treating them is a small part of the NHS budget. We must find a better way for all parties to work together to facilitate the passage of orphan drugs for rare conditions through NICE and the commissioning process.

I thank colleagues and the Minister for listening to my remarks, and I thank the Cotter family for being here today. Britain is a world leader in medical research, so let us ensure that British patients, such as my constituent, Cait, can be among the first in the world, not the last, to benefit from medical discoveries.

[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.

Oral Answers to Questions

Vicky Ford Excerpts

Tuesday 20th March 2018 Commons Chamber

[Vicky Ford (Chelmsford) (Con)]

Part of the life sciences strategy is about ensuring that we have the skills for the future. May I thank the Secretary of State for the fantastic news about the five new medical schools opening in the country, including in Chelmsford?

[Mr Hunt]

I am most grateful for those thanks, and I am looking forward to many more doctors coming from Chelmsford.

Oral Answers to Questions

Vicky Ford Excerpts

Tuesday 6th February 2018 Commons Chamber

[Mr Speaker]

There really is a magnificent array of rosettes on both sides of the Chamber, which today—today only—I will allow to influence me.

[Vicky Ford (Chelmsford) (Con)]

This is a very proud day to be a woman in this House. In mid and south Essex there are plans for a hyper-acute stroke unit at Basildon Hospital. Will the Secretary of State or one of the Ministers confirm that that will be an improvement of services for my constituents in Chelmsford, and not a downgrade?