Medicinal Cannabis

Luke Evans Excerpts

Thursday 30th January 2025 Westminster Hall

[Dr Luke Evans (Hinckley and Bosworth) (Con)]

I am grateful for the honour of responding for His Majesty’s Opposition in this debate, Ms McVey.

I thank the hon. Member for Strangford (Jim Shannon) for his tireless dedication to health issues—not just this one, but many others. In my short career on the Front Bench, I think this is already the fourth time in the space of six weeks that I have responded to a debate that he has secured; I congratulate him on his success in doing so. He never ceases to amaze me, because not only does he represent his own constituents—he has told us so passionately about Danielle, Sophia and their story—but he even represents others’ constituents as well, bringing forward and championing their issues. His ability to step forward and raise those issues is a true testament to the parliamentarian he is, and he has my full admiration and respect for doing so.

Today we have heard some moving stories about the difficulties faced by patients who are suffering, and about the plethora of conditions that could benefit from having these medications. I thank Medcan Family Foundation and the Medical Cannabis Clinicians Society for their advocacy on the issue, and for repeatedly bringing that information to the fore so that this country can debate such an important topic.

The debate has focused on the challenges that many children and adults face with accessing medical cannabis, but we appear to be in a new phase when it comes to managing the fact that such prescribing is becoming more prevalent. It is worth recognising, as we have done, that there was no legal route for such treatment only seven years ago. It was Sir Sajid Javid, who, as the Home Secretary, listened to the families and commissioned a review into that area to allow the creation of legal routes for accessing those medications. That decision has led to significantly more people being able to access licensed cannabis-based medicines.

Between January 2018 and September 2024, written answers show that 24,395 NHS prescriptions for licensed cannabis-based medications such as nabilone, Sativex and—even as a doctor, I am struggling to say it—Epidyolex were dispensed across the community in England. However, it must be recognised that that is dwarfed by the number of private prescriptions currently being issued. Where there have been challenges with access to licensed medications, as with Sativex, the last Government worked with the NHS to take steps to increase uptake of prescribing. On 6 September 2021, the NHS wrote to local trusts and integrated care boards reminding them about NICE’s guidance relating to that medication, and their responsibilities to prescribe in line with NICE recommendations. My understanding is that the letter contributed to an increase of prescriptions of Sativex.

However, challenges remain with access to unlicensed cannabis-based medications. We have heard that those medicines must be accessed through individual funding requests, but clinicians are wary of prescribing them, because of concerns about both the evidence base and the legal responsibilities involved. I can attest to the fact that, as a doctor who prescribes unlicensed medications, one looks for guidance on the best way to do so safely. The law was changed in part to encourage more research and clinical trials so that robust evidence can be collected, potentially leading to marketing authorisation and licensing. In the meantime, it is notable that NICE guidance does not prohibit healthcare professionals from considering unlicensed medications. In 2021, NICE stated:

“The fact that NICE made no such population-wide recommendation should not however be interpreted by healthcare professionals as meaning that they are prevented from considering the use of unlicensed cannabis-based medicinal products where that is clinically appropriate in an individual case. Patients in this population can be prescribed cannabis-based medicinal products if a tertiary paediatric epilepsy specialist considers that that would be appropriate on a balance of benefit and risk, and in consultation with the patient, and their families and carers or guardian.”

However, a recent report by Medcan Family Foundation has highlighted that more restricted prescribing in some areas may be leading to serious or unintended consequences. It is concerning to see, when reviewing their research, that three online forums identified 382 families in the UK who are giving their child illegal cannabis products specifically to manage epilepsy. Given the nature of that research, it could be argued that the figure may be significantly higher nationwide. Is that just the tip of the iceberg?

It is worth reflecting on some of the debates that have taken place in this House that have been mentioned previously. I think it was Mark Twain who said, “The past doesn’t repeat itself, but it does rhyme,” which I feel is apt in this case. To that end, it is always wise to try and learn from previous experiences. After all, advice from the wise is like the torch in the dark; it does not walk the path for us but it does light the path. So I looked at Hansard for the last debate and noted a particularly strong contribution from the then shadow Health Minister, the hon. Member for Bristol South (Karin Smyth), who is now the Minister with the power at her disposal. I think it is fair to ask her the questions she posed to the then Minister:

“It would be helpful if the Minister could set out what steps he is taking to empower and accelerate research in this space. I hope he will not dodge the question by saying that the issue is simply one for clinicians. The Government have a responsibility—the Minister is nodding, and we await his reply with interest, but there seems to be a lack of urgency on the issue, which is concerning. People are suffering right now. We have heard again this afternoon about children who are fitting, sometimes 100 times or more. Accessing care is, in some cases, pushing families to the brink of destitution. We should do everything we can to support those people.

If research is needed before clinicians feel comfortable prescribing, then it is incumbent on the Government to support clinicians. We need more streamlined clinical trials and better engagement with clinicians. We do not want to be back here in another two years, having a rerun of this debate. In 2020-21, the then Minister said:

‘It will take time to generate further evidence and see the results of clinical trials. The Health Secretary and I are committed to doing everything in our power to accelerate this work.’

If the Minister could update us on where this work has got to, and whether the Government are any closer to finding a solution, that would be welcomed by people tuning in today, and to the families present.

Finally, I would be grateful if the Minister set out what action he has taken to support people in the system right now—those living in extreme pain who are paying thousands of pounds to access treatment. There is consensus on this issue, as we have heard. The debate has been had and a decision has been made, but we can and should do better. In that spirit of consensus, we would all like to see some progress from the Minister.” —[Official Report, 20 April 2023; Vol. 731, c. 223WH.]

The Minister is clearly a strong advocate, and she is now in a position of power. She has been in post for over half a year, so what steps has she taken to empower and accelerate research in that area? What action has she taken to streamline clinical trials? Since taking office, what steps has she taken to empower clinicians to prescribe and to feel more comfortable? Since being in post, what action have her Government taken to support people in the system now?

It seems to me that the debate has moved on, but it is still rhyming. We are two years on and progress has been made. More than 24,000 prescriptions clearly represent an improvement. As has been said today, however, there is more to do, and we have new problems. The right hon. Member for Dumfriesshire, Clydesdale and Tweeddale (David Mundell) talked about the legal farming industry, the Hilltop Leaf situation and trying to create a virgin industry. My hon. Friend the Member for Broadland and Fakenham (Jerome Mayhew) talked about the clinical pathways and how they need to be specifically looked at. The hon. Member for Strangford highlighted policing, given that there is a growth in use. I will not tempt the Minister to stray into the Home Office brief, but I want to ask what conversations she is having with her Home Office counterparts about legal medical cannabis.

I hope the Government will continue to progress in this space as the issue evolves. They will have the Opposition’s support as they continue to research, educate and raise awareness. I hope the Minister will agree to meet Medcan and the Medical Cannabis Clinicians Society, if she has not done so already. Given the concerns that have been raised today, perhaps as a first step she will write to trusts and ICBs again to highlight the guidance on prescribing these medications. After all, we all want the safest, most effective medications to treat patients as soon as they are needed, and they should be uniformly accessible. I believe that noble aim is distinctly achievable, and I hope the Minister does too.

Auditory Verbal Therapy

Luke Evans Excerpts

Tuesday 21st January 2025 Westminster Hall

[Dr Luke Evans (Hinckley and Bosworth) (Con)]

It is a pleasure to serve under your chairmanship, Mr Western. I congratulate the hon. Member for Washington and Gateshead South (Mrs Hodgson) on leading this debate and pay tribute to Auditory Verbal UK for its tireless advocacy in this area. I know that, to obey parliamentary protocol, I should never direct comments to the audience but I would like to say thank you to Sam for his advocacy and for being here to watch this debate. Maybe one day he will be on these green Benches, advocating for further changes, although I hope the Government will have served that purpose by then. If Sam is listening, I hope it is okay, Mr Western, to put those comments to him through you.

As Members have noted, the provision of auditory verbal therapy was previously discussed in the House in December 2023. In the aftermath of that debate, I understand that AVUK held discussions with the Department of Health and Social Care and received support from two Ministers in the last Government: Maria Caulfield, the former Member for Lewes, and Dame Andrea Leadsom, the former Member for South Northamptonshire. I also understand from the charity that, before the election, the last Government were considering how to roll out training for auditory verbal therapy and to upskill the existing speech and language therapist workforce. That is part of the workforce plan for the NHS and I am pleased to see that the current Government are continuing in that vein.

Helen Keller said that the only thing worse than being blind is having sight but no vision. Since the election, it appears that the Government are possibly stepping back from this area. Recent responses to written questions have indicated that the Government have no plans to review the adequacy of the provision of AVT and have stated doubts about the strength of the current evidence supporting its effectiveness, but today we have heard arguments made about a range of studies that suggest AVT really can support deaf children to develop age-appropriate spoken language and attain educational outcomes on par with hearing children. It is not for us, at this point, to make a decision but it is for this House to raise this topic. As a first step, will the Minister commit today to meeting Auditory Verbal UK so that it can present the latest evidence and research from the UK and abroad?

We know that integrated care boards are responsible for commissioning services for their local communities, including the provision of auditory verbal therapy. Thanks to charitable funding and efforts from AVUK, there are now 33 certified AV therapists across the UK. However, as other Members have noticed, there are still major gaps in provision, particularly in the public sector. Will the Minister therefore commission a review about the impact and effectiveness of the AVT that is currently taking place in the NHS? Although there are five AV therapists in Manchester, there is just one for the whole of the west midlands, and, as the hon. Member for Washington and Gateshead South mentioned, there are currently no AV therapists in the north-east. The hon. Member for Bolton North East (Kirith Entwistle) also said that there are none in the north-west. That highlights the postcode lottery, which needs to be addressed—especially when, as we have heard, there are 50,000 deaf children in the UK.

AVUK has argued that national guidance to ICBs could help to improve provision across England. Although the National Institute for Health and Care Excellence has guidance on hearing loss for adults, there is no such guidance for children. We know we need an evidence base for guidance, and, given that NICE is the organisation responsible for that, it seems reasonable to focus our attention on it. Can the Minister commit to speaking to NHS England and NICE about current guidance for hearing loss and whether it needs to be updated in the light of the emerging evidence around AVT?

Much has been said by Members today about the return on investment we can see from putting more money into AVT. AVUK has said that for every £1 invested in therapy, there could be as much as a £4 return. We have seen in other areas—for example, the children’s hospice grant—how a small amount of national funding can go a long way in supporting community services across England. Therefore, as decisions are made on the allocation of NHS funding announced in the autumn Budget, will the Minister consider AVUK’s ask to provide funding to train more public sector workers in AVT? I think it was also Helen Keller who said, “I cannot do everything, but I can do something. I must not fail to do something that I can do.”

I congratulate the hon. Member for Washington and Gateshead South on securing this important debate and raising these issues. Deaf children across the land are lucky to have an advocate in her—she is doing her part. I thank the hon. Members for Strangford (Jim Shannon), for Bolton North East, for Bury North (Mr Frith), for Bolton South and Walkden (Yasmin Qureshi), for Derby South (Baggy Shanker) and for North Shropshire (Helen Morgan); they too, are doing their part by raising the issue in this debate. I thank AVUK for all it does; it is doing its part. I hope, in raising constructive questions as His Majesty’s Opposition, I am doing my part, too. In turn, I hope that the Minister will answer my questions and others raised today, meet AVUK and assess its evidence, and make appropriate recommendations and changes with the Department of Health and Social Care and the NHS so that deaf children can reach their full potential—in doing so, he will fulfil his part.

--- Later in debate ---

[Stephen Kinnock]

I can certainly tell my hon. Friend that this is a very dynamic situation. A system never stands still. For a system to work, we have to be constantly reviewing its performance and whether it is delivering to its objectives. I believe that the 10-year plan that we are producing will absolutely lead to a radical rewiring of the way our health and care system works. It will be driven by three big shifts: from hospital to community, from sickness to prevention, and from analogue to digital.

There is no doubt at all that where there are therapies and treatments that are working—that are clearly delivering big results, and value for money for the taxpayer—it is right that we give those priority in the way that we deliver. It is clear that AVT has huge potential, and it appears to have unexplored potential. I cannot pre-empt today how this is all going to pan out in terms of the system and the reforms that we are looking to push forward, but I can assure my hon. Friend that we are committed to innovating and to building a system that is fit for the future.

In 2019, with input from the National Deaf Children’s Society, NHS England produced a guide for commissioners and providers who support children and young people with hearing loss. The guide provides practical advice on ensuring that non-hearing children receive the support they need. Auditory verbal therapy is one type of therapy to support children with hearing loss, and it is important that local commissioners know their population and have the discretion to decide how best to meet its needs. When it comes to commissioning and providing services for children with hearing loss, we have been crystal clear with ICBs and NHS trusts that they must take the relevant guidelines into account.

We recognise the real need to improve access to therapies for all children who need them, including children with hearing loss. In recent years, in very difficult circumstances, the NHS has increased the number of speech and language therapists working in the service, but we know that more needs to be done. That is why the Government are committed to fixing the NHS and building a service that is fit for the future, with the workforce it needs to get patients seen on time.

[Dr Luke Evans]

The Minister rightly points out the need to try to deal with the postcode lottery and to ensure that there are reviews and sharing of best practice, but may I draw him back to my comments about guidelines? One thing he could do is ask NICE to look at the current evidence and consider what national guidance should be in place. ICBs have the right to choose what kind of treatment they think works best, and they will be driven by the clinical evidence and clinical guidelines; if there are no clinical guidelines, they will simply make their own decisions. Will the Minister commit to doing that?

[Stephen Kinnock]

The hon. Gentleman will know that NICE has a prioritisation board, and ultimately that is the decision-making process for prioritising guidelines and the entire operating framework for what falls under NICE’s remit. This is something that absolutely should be on the radar, and of course we are constantly in conversation with NICE about its prioritisation, but it is important that it takes an objective clinical stance on the question.

We have committed to develop a 10-year plan to deliver a national health service that is fit for the future. The engagement process has been launched. As we work to develop and finalise the plan, I encourage those concerned about the availability of services to support children with hearing loss, including auditory verbal therapy, to engage with that process to allow us to fully understand what is not working, as well as what should be working better and the potential solutions. I encourage all hon. Members present to go to change.nhs.uk to make their voice heard.

This summer, we will publish a refreshed long-term workforce plan to deliver the transformed health service we will need to build over the next decade to treat patients on time and deliver far better patient outcomes. We are also in the process of commissioning research to understand the gaps between the supply and demand of different therapy types for children and young people with special educational needs and disabilities. That will help us to understand the demand for speech and language therapists and inform effective workforce planning.

New Hospital Programme Review

Luke Evans Excerpts

Monday 20th January 2025 Commons Chamber

[Edward Argar]

And Madam Deputy Speaker. [Laughter.]

[Dr Luke Evans (Hinckley and Bosworth) (Con)]

She’s happy with that!

[Lincoln Jopp]

I also congratulate the Secretary of State on coming to the Chamber with such a massive capital expenditure announcement and eliciting a saving with his answer to the first question from the hon. Member for Mitcham and Morden (Dame Siobhain McDonagh).

One of the plans that went by the board in May, for reasons I have not quite got to the bottom of, was for the Staines health and wellbeing centre, which is one of only six community diagnostic hubs that NHS England has allocated in England. The funding got pulled in May; will the Secretary of State please have another look at it?

Medicines and Healthcare Products Regulatory Agency

Luke Evans Excerpts

Thursday 16th January 2025 Commons Chamber

[Dr Luke Evans (Hinckley and Bosworth) (Con)]

I congratulate my right hon. Friend the Member for Tatton (Esther McVey) on securing this debate, and on giving Members from across the House the opportunity to raise issues such as Primodos, breast implants, mesh, SSRIs, vaccines and MMR. As a clinician, I have seen patients who have been affected by all these issues, and I know the heartfelt difficulties that they have faced—not only in what has happened to them, but in trying to resolve the problems. It is a testament to her that she has given the House the chance to debate these issues, and I am not sure that the public have ever paid so much attention to a regulator, even in the financial crisis. The MHRA has suddenly become something that people know.

I often used to explain to patients that a regulator should be like a good referee: we should not see them, but they should be there to hold people to account and know the rules. However, modern refereeing is about more than that. A referee has already met the players beforehand, and speaks to the public about how things work. They help to shape the way in which the rules should be interpreted, allowing us to improve the game.

The hon. Member for Great Yarmouth (Rupert Lowe) asked who regulates the regulators, and the answer is that this House is accountable. That accountability is key.

What are the functions of the MHRA? They are: to ensure that medicines, medical devices and blood components for transfusion meet applicable standards of safety, quality and efficacy; to secure safe supply chains for medicines, medical devices and blood components; to promote international standardisation and harmonisation to ensure the effectiveness and safety of biological medicines; to educate the public and healthcare professionals about the risks and benefits of medicines, medical devices and blood components, leading to safer and more effective use; and to enable the development of innovation and research that benefit public health.

I welcome the MHRA’s new chair, Professor Anthony Harnden, who was appointed at the start of the year. I hope he is listening to this debate, as it will be important for him in setting his priorities. I pay tribute again to my right hon. Friend the Member for Tatton because, whether or not the MHRA knew this debate was happening, I noticed during my research that all the guidance was updated on the MHRA’s website only yesterday. That is testament to the power of this place, even if inadvertently.

The last Government did a lot in this space, particularly focusing on patient safety and access. They introduced new regulations on medical devices, with the classic example being diabetes monitoring, but they also set out to attract innovation. Their reforms have helped to make the UK an attractive market for medical technologies. I am pleased that both sides of the House agree that this is a great place for the UK to find growth.

These developments were based on a consultation-led approach, following the changes we have had since 2021, when there was a consultation on the future regulation of medical devices. This led to a proportionate and phased approach that minimises supply disruptions and supports system readiness.

Under the last Government, a road map for implementation was set out on 9 January 2024. Again, I am pleased to see that the current Government updated the road map in December. This has the regulatory aims of adapting new technologies, strengthening patient safety and providing clarity for manufacturers that are trying to bring products to market.

All these significant changes try to balance medical technology advances, market capture, patient access, affordability and clinical outcomes. However, as we have heard in this debate, this is all well and good, but “perception versus reality” comes to mind. We arguably have one of the best regulatory regimes in the world and, post Brexit, there is a real opportunity to lead the way. Counter to what the Lib Dem spokesperson, the hon. Member for Mid Sussex (Alison Bennett), said, it is because of Brexit that we were able to regulate around our vaccines.

As has been said today, there are still serious concerns about the system, surveillance and resources, given the medical tech boom. This is a wide debate, so I will focus my remarks on three areas: the current medical market, the emerging medical market, and communications with the public, perceptions and beliefs.

When it comes to the system for current medications, we need only consider what we heard earlier about SSRIs, and particularly their impact on sexual dysfunction —I happen to have that casework on my desk at the moment. Do the Government believe that the yellow card system works, or will they consider a review?

When it comes to emerging markets, we have to remember that the MHRA has a statutory role not only in regulating but in the advertising and promotion of medicines in the UK. We have seen thousands of online adverts for weight-loss injections, such as Ozempic. The Times found approximately 6,500 adverts that mention GLP-1 on Meta’s ad library between January 2022 and the end of June 2024. And Sky has reported that, according to Simple Online Pharmacy, which has access to wholesale figures, 500,000 people in the UK are currently using things like Wegovy.

I would be grateful if the Government could set out what support they are offering the MHRA to ensure that it can fulfil its roles and functions properly, given that it has to manage promotion, safety and supply in all these areas. Are there any plans to review whether the MHRA is able to meet these conditions in a changing medical world?

Finally, and most importantly, if I were to be critical of the MHRA, I would say that the key thing missing on the list of objectives, as set out by the new chair, is communication. Let me finish where I started: a regulator has never been more in the public eye. As a clinician, I know how difficult it is to wade through complex medical data that is both conflicting and opaque. As my right hon. Friend the Member for Tatton pointed out, freedom of information requests and transparency are key to our understanding of this area. Will the Government look to review how the MHRA interacts with the public, how it communicates with grassroots professionals, and what it can do to explain the hugely important work that it does?

To conclude, as my hon. Friend the Member for Christchurch (Sir Christopher Chope) and the hon. Member for Dewsbury and Batley (Iqbal Mohamed) pointed out, this is all about trust. I think it was Reagan who said, “Trust, but verify”. That seems particularly apt for this debate—for that is the role of a regulator, but it is also the role of the Government and the public. We must build a regulatory system that all can trust, and do so inherently, but that is also easily verifiable at any point. If we can achieve that, we can build a trusted ecosystem that is good for innovation, good for the economy, and, most importantly, good for the people.

Hospice and Palliative Care

Luke Evans Excerpts

Monday 13th January 2025 Commons Chamber

[Dr Luke Evans (Hinckley and Bosworth) (Con)]

I thank the hon. Member for Wimbledon (Mr Kohler) for securing this debate. I was going to test the patience of the House by reading out all the hospices that have been named, but we got to 45 and I realise that time is short, so I will not do so. It is, however, a testament to those hospices’ services that so many Members have spoken so fondly about them.

On behalf of His Majesty’s Opposition, I would like to discuss three areas: the conversation about death; palliative services and the ecosystem; and some specific technical questions. It is rare in this House that we debate a topic that impacts literally everyone, and it is an honour to play my part in highlighting something I have long argued is not talked about nearly enough—that is, death and dying. We all know that the only certainty is death, but there is a variable, which is the quality of death. That has been the focus of today’s debate. After all, it was Woody Allen who said:

“I’m not afraid of death, I just don’t want to be there when it happens.”

Palliative care services dedicate their lives to making sure that people who will die do so with dignity. Many people think of hospitals or hospices in relation to death, and their staff do fantastic work, but we must not forget the pivotal role played by the likes of district nurses and GPs in ensuring there is palliative care in our nation. In my constituency, I am blessed with hospice care from Loros for adults and Rainbows for children, both of which are much loved by the public and, most importantly, supported by armies of volunteers. Those people deserve this House’s and the public’s recognition and respect for what they contribute to our society.

Dying can be a difficult subject to talk about, as I know from my clinical days, but that does not make it any less important. I pay tribute to this House for the way in which it handled and discussed the assisted dying debate. Whatever position people take, it is fantastic to see a national debate now taking place across dinner tables up and down this country. So my first question to the Government is: what is being done to ensure that people look to plan their deaths better?

When we talk about the wider ecosystem, we have to consider the roles of hospices, hospitals and primary care providers such as district nurses, who are all key stakeholders, and the nature of how they have ended up being involved in palliative care and the different journeys they have made to do so. That is beyond the scope of this debate, but it is important because it informs the make-up and patchwork of palliation across this country. As we have heard, there is a balance between charitable funding and NHS funding, and even this House is divided on what that formula should look like and whether it should be solely state funded or charitable.

My second question to the Government is: will they consider consulting on a long-term funding model that allows this debate to take place, so that we have a better balance between the two? Building on that, looking at it from the clinical point of view, part of the issue at play is what the provision should even look like.

My third question to the Government is: will they commit to establishing agreed basic standard criteria for service-level provision, and to getting a national agreement on the provision of palliative care services and what they look like for whatever a person should choose?

On the record of the last Government, we legislated in the Health and Social Care Act 2022 to ensure that commissioning was taking place. As part of the NHS response to covid, £350 million was given to support hospices in those difficult times. NHS England also put in grant funding for a 24/7 single point of access for palliative care support. As we have heard, the last Government also increased the funding for the children’s hospice grant from £15 million in 2020-21 to £25 million, and I am pleased to see the Government continue that trajectory. To help manage staff, the last Government brought forward the first ever NHS workforce plan, and I commend this Government for continuing to commit to that.

With the debate about assisted dying and the concerns expressed by the Health Secretary about provision, however, my fourth question to the Government is: what assessment have they made of the impact of assisted dying on provision? I believe the Secretary of State was commissioning work on this, so when will the results be released?

On assisted dying and the ability to provide the services, this is not the right place to suggest whether they are right or wrong, but whether or not the Bill passes, I hope we will not let it distract us from the mission of continuing to improve palliative care and end of life services, for which there is momentum in the House and among the general public.

On the specific questions from the sector, it would be remiss of me not to raise the concerns about Labour’s Budget and its impact on the palliative care sector. The employer national insurance contribution increases are a tax on charities—fact. Charities are not covered by the NHS exemption. Hospices are charities, so they are being taxed—fact. GPs provide palliative care and support. They are not covered by the NHS exemption, so they are being taxed—fact.

Hospice UK has estimated that an additional £30 million will need to be found. This means that charities and non-profit organisations such as Sue Ryder, Macmillan and Marie Curie are being hit with additional wage bills, requiring more money just to provide the same level of care. The Government have said that they will give £100 million to hospices, but it has been made abundantly clear in this debate that it is for capital expenditure only, unless the Minister would like to correct me.

What assessment have the Government made of what the spending review will look like when it comes to palliation? It is hard not to see this as a Labour Government giving with one hand while taking with the other—taxing GPs and hospices in order to give them money back in a way that they do not want.

On staffing and contracts, some staff are employed by the NHS, while others are directly employed by the hospices. Have the Government made an assessment of the impact that will have on recruitment? For example, palliative care consultants face a postcode lottery of terms. Will the Government consider looking at that?

Palliative care consultants’ contractual arrangements throw up another oddity in the sector: some NHS palliative care consultants have Crown indemnity, while others employed by hospices do not, costing them thousands of pounds. Will the Government consider looking at that?

On the allocation of funding process, Together for Short Lives has called on the Government to confirm whether the £26 million will be ringfenced for children’s hospices and distributed centrally to avoid delays. Previously, the decision was made to give it to ICBs to better help local decision making. Although well meaning, that has resulted in delays. Are the Government aware of this issue and, if so, will the Minister commit to working to smooth it out?

There is much more that I could say on the topic, and I sure that the same is true for many others. The UK has an ageing population, and demand for palliative care will continue to rise in decades to come. In this House, we have the opportunity to make a difference for all who come after us. At the heart of looking after the dying is compassion. True compassion means not only feeling another’s pain, but being moved to help relieve it. This Government have the power to do that, and I hope they will.

Oral Answers to Questions

Luke Evans Excerpts

Tuesday 7th January 2025 Commons Chamber

[Mr Speaker]

I call the shadow Minister.

[Dr Luke Evans (Hinckley and Bosworth) (Con)]

To improve access, the Government have announced a planned expansion of advice and guidance, and GPs will be paid £20 per advice and guidance request they make for further expert advice from consultants. How do the Government expect this expansion to take place? Will they be mandating it given that the current position of the British Medical Association, under its collective action, is that GPs should

“Stop engaging with the e-Referral Advice & Guidance pathway”?

[Wes Streeting]

I think the shadow Minister will find that GPs welcome the £889 million uplift announced just before Christmas. That is the biggest boost to general practice in years. It is part of this Government’s agenda to fix the front door to the NHS and recognise the dire state that GPs were left under. Of course, with that investment comes reform. I think GPs would be delighted to manage more of their patients in the community if given the tools to do the job, and that is something this Government are committed to doing.

[Dr Evans]

Going back to advice and guidance, GPs use advice and guidance when they have come to the summit of their knowledge and need specialist input. For example, as a GP, I may see a rheumatology patient and ask for advice from a rheumatologist, who may advise specialist blood tests. The problem is that, as the inquiry clinician, I am legally responsible for those blood tests and have to pay for them out of the primary care budget. Do the Government propose that the £20 will cover subsequent follow-ups and the cost of suggested tests? Given the expansion of advice and guidance, will the Government be looking at a legal framework change in accountability for clinicians making requests?

[Wes Streeting]

First, as the shadow Minister has said, advice and guidance happens in general practice, and we want to see more of it. We have to give GPs the tools to do the job, and that is what we are doing. My hon. Friend the Minister for Care will be talking to the BMA shortly in the context of contract negotiations in the usual way. What the shadow Minister neglects to mention is that these reforms and improvements to general practice are made possible thanks to the £889 million we are putting in, which is investment that he and his party oppose.

Community Pharmacies: Devon and the South-west

Luke Evans Excerpts

Tuesday 17th December 2024 Westminster Hall

[Dr Luke Evans (Hinckley and Bosworth) (Con)]

It is a pleasure to serve under your chairmanship, Mr Betts, and to speak across the Chamber from the Minister for the first time.

As a GP, I am grateful for the fact that 38 million GP appointments are saved each year. Although the temptation is to try to thank everyone—it can feel like doing a set of prescriptions again—I pay particular tribute to the pharmacists, because whenever I used to get a call from a pharmacist, I always knew that they were right and that I should listen carefully to what they said.

As of January 2024, there were more than 10,000 pharmacies providing NHS services, with 80% of the population living within 20 minutes’ walking distance of a pharmacy. We know that the number of registered pharmacists also grew consistently under the last Government, up 61% in 2024 compared with 2010. I am pleased to hear that the Government are still committing to the NHS workforce plan. As we have heard today, there are still difficulties in meeting recruitment needs.

I congratulate the hon. Member for Tiverton and Minehead (Rachel Gilmour) on securing her first debate. As she rightly pointed out, there are many difficulties in the sector. I would like to take a quick canter through them. With five minutes, I have five questions to the Minister.

The first and most obvious issue is the community pharmacy contractual framework, which is so important to the financial agreement for 2024-25. This was a deal struck in July 2019 to provide £2.59 billion in annual funding to NHS pharmacy services. Under the last Government, in 2023, the NHS published a delivery plan for improving access to primary care, which included a £645 million investment over two years to expand community pharmacies. However, the delays in the negotiations are having an impact on pharmacies across the country. In a recent letter, Community Pharmacy England wrote that

“there will not be a community pharmacy sector left to deliver the Contractual Framework, let alone the future ambitions of the Government and the NHS.”

Question No. 1 is: can the Minister provide an update on the negotiations? When will it start, and will there be published terms of reference?

My next question relates to the impact of the increases in national insurance contributions and the national living wage—the Government’s choice to place a burden of about £50 million on the sector, as has been set out. The Government have exempted secondary care, but made no such commitment to community pharmacies. Question No. 2 is: was the Health Department aware of the Treasury’s decision, and did it raise concerns about pharmacies and the impact the changes would have? After all, it has led the National Pharmacy Association to vote in favour of collective action for the first time in their history, saying:

“The sense of anger among pharmacy owners has been intensified exponentially by the Budget, with its hike in national insurance employers’ contributions and the unfunded national living wage increase, which has tipped even more pharmacies to the brink.”

Question No. 3 is: what mitigations are planned and when for? As we have heard from the Prime Minister, the Chancellor and the Health Secretary, it will be done in the usual way. Decisions are being made now, so could they please set that out?

Let me turn to the evolving model of Pharmacy First. The programme has shown just how capable pharmacies are, and it has been welcomed. There is great potential for the service to benefit patients, yet recent data from NHS England identifies that GP referrals to Pharmacy First in England can vary quite significantly across integrated care boards. For example, in Greater Manchester, there were 11,683 referrals, whereas in Cornwall and Isles of Scilly, there were 612. There could be obvious reasons for that, such as demographics or locations, but question No. 4 is: can the Minister clarify what the Government are doing to promote Pharmacy First services, and share that data?

I was pleased to hear the hon. Member for Mid Dorset and North Poole (Vikki Slade) discuss the issue of dispensing GPs. There are 948 dispensing GPs, and they account for 7% of prescriptions, covering almost 9 million people, many of whom are in rural areas. Not much is mentioned about what they do, so I am keen to understand the Government’s position on dispensing GPs. Question No. 5 is: will the Minister set out how he perceives the landscape? Given the time constraints of this debate, perhaps he can write and give me an idea of what it would look like.

Finally, the pharmacies stepped up during the pandemic. They were the lightning rod not only for getting medications out but for providing the much-needed vaccinations that allowed us to relieve lockdown. Christmas is one of their busiest times—I have seen that at first hand. I would like to put on record our thanks, from both sides of the House, for the fantastic job that they do.

[The Minister for Care (Stephen Kinnock)]

It is a real pleasure to serve under your chairship, Mr Betts. I thank the hon. Member for Tiverton and Minehead (Rachel Gilmour) for ensuring that this really important debate can take place today. I start by acknowledging and paying tribute to the outstanding work of community pharmacy teams in Devon, the south-west and right across the country. I have heard so many examples, showing just how many patients and communities rely on pharmacy services, and the lengths to which they go to deliver care. I thank them for their professionalism, hard work and dedication in providing excellent standards of patient care.

It is a credit to them that surveys show that nine in 10 people who visit pharmacies feel positive about the experience. Community pharmacies are often the most accessible part of our NHS, allowing people to access professional healthcare advice right there on the high street. They are also vital in supporting rural communities and people living in remote locations. Furthermore, as community pharmacies provide more clinical services, they help to relieve pressure in other areas of the NHS. That includes freeing up GP appointments, preventing hospital admissions and reducing overall pressure on secondary care.

For far too long, however, Governments have failed to recognise the essential role of community pharmacies in safeguarding the nation’s health. On 4 July, we inherited a system that has been starved of funding, with a 28% cut in funding in real terms. In many ways, it is on its knees, with far too many closures happening across the country. Lord Darzi’s report laid bare the true extent of the challenges facing our health service. Even he, with all his years of experience, was truly shocked by what he discovered. His report was vital, because it gave us a frank assessment—a diagnosis—so that we can face the problems honestly and properly. It will take a decade of national renewal, lasting reform and a long-term plan to save our NHS. We have committed to three key shifts: from hospital to community, from analogue to digital, and from sickness to prevention. Our 10-year plan will set out how we will deliver these shifts to ensure that the NHS is fit for the future.

To develop the plan, we must have a meaningful conversation with the country and those who work in the system. We are therefore conducting a comprehensive range of engagement activities, bringing in views from the public, the health and care workforce, national and local stakeholders, system leaders and parliamentarians. I urge Members, their constituents, and staff across health and social care to tell us what is working and what needs to change. They should visit change.nhs.uk and make their voice heard.

The Government are committed to restoring the NHS to its founding promise that it will be there for all of us and our constituents when we need it. However, as identified by Lord Darzi’s review, primary care is under massive pressure and in crisis. I recognise that it is a really challenging environment for colleagues in all parts of the NHS, including in community pharmacy, but we remain resolute and determined to fix this situation.

Pharmacies are based in, and are a key part of, the communities that they serve. They are ideally placed to help to tackle inequalities and to increase the reach of and access to NHS services. This includes delivering a range of health advice and support services, helping to relieve pressure on and improve access to the wider NHS. Community pharmacies are a vital part of our NHS that must be recognised in the development of the Government’s 10-year plan. They are central to the three big shifts in healthcare that I outlined earlier. I know that pharmacies can and should play an even greater role in providing healthcare on the high street. This will be imperative if we are to deliver across the Government’s mission—not just on the health mission, but on growth and opportunity.

A healthy society and workforce are pre-conditions for prosperity and growth. We have a staggering 2.9 million people who want to work, but are unable to do so because they have been failed by our health and care system for the last 14 years. Community pharmacy has a pivotal role to play in getting our economy back on its feet and fit for the future, whether that is by identifying those with risk factors for disease such as high blood pressure, or ensuring that people can access and use their medicines to best effect. As a Government, we are fully committed to working with the sector to achieve what we all want: a community pharmacy service that is fit for the future.

I am keen to unlock the potential of the whole pharmacy team. We want pharmacists to be providing new and impactful clinical services, including our future pharmacies prescribing service. We want pharmacy technicians to have more responsibility in supporting the pharmacists, to help people to deliver the best possible health outcomes.

Every day, pharmacy teams facilitate the safe supply of medicines to patients, enabling them to manage health conditions as part of their daily lives in Devon, the south-west and right across the country. They also provide vital advice on prescriptions, over-the-counter medicines and minor ailments. But pharmacies do not just dispense medicines and offer advice. They do much more. They positively impact patients’ health and support the wider NHS by providing a wide range of clinical services. Many offer blood pressure checks, flu or covid-19 vaccinations, contraception consultations and many more locally commissioned services.

[Dr Evans]

The Minister is espousing brilliantly what community pharmacies do. That all comes under a contractual framework, and one of the key things that pharmacies are asking for is when the negotiations will start and what the terms of reference will be. Will the Minister address that point?

[Stephen Kinnock]

I thank the shadow Minister for that intervention. I am as frustrated as everybody else about the delay. The reason for the delay is that the negotiations did not get over the line before the general election. The general election came, and we have spent a lot of time now clearing up the disastrous mess that the previous Government made of the system. I can say that we are now very focused on getting these negotiations started early in the new year. I know that hon. Members across the House will be very interested in that, in terms of the contractual framework, the medicines margin and all of the funding. We have a statutory duty to consult with the sector before we can make any announcement, but we are confident that we will start the negotiations early in the new year.

We supported Pharmacy First in opposition, and we will build on that programme in the future. We look to create an independent prescribing service, where prescribing is an integral part of the services delivered by community pharmacies. We are also doing a lot of work on the IT infrastructure to make sure that the sector can more easily prescribe and refer through better IT. That is an important part of our shift from analogue to digital. We need pharmacies delivering services that help patients to access advice, prevention and treatment more easily—services that help people to make best use of the medicines they are prescribed and that ease some of the pressures in general practice and across parts of the NHS.

There are more than 10,000 pharmacies in England. They are busy dispensing medicines, offering advice and providing these services. Patients across the country can also choose to access around 400 distance-selling pharmacies that deliver medicines to patients’ homes free of charge. They play a vital role in reaching the most isolated members of our society.

I am very keen to ensure that the hon. Member for Tiverton and Minehead has a minute at the end of the debate to sum up. In the short time I have, I want to say a couple of words about her constituency, where there are 15 pharmacies. We are aware of the closure of one pharmacy in her constituency since 2017 and that the local population instead get their medicines from the neighbouring dispensing GP. I also note that, according to the latest data, there are 203 pharmacies in Devon; across the south-west, there are 916. Where closures have occurred across the south-west, the ICBs are working through the process of approving applications from new contractors. Some applications have already been granted. Following approval, the new pharmacy contractor has 12 to 15 months in which to open a pharmacy, so the ICBs are also working with GP practices and other contractors to minimise any temporary disruption for patients.

Community pharmacies are a vital part of the NHS and communities across our country. The Government are committed to supporting them now and into the future. I look forward to working with pharmacists across the country and hon. Members across this House as we progress our plans to embrace the skills, knowledge and expertise in pharmacy teams.

Rare Autoimmune Rheumatic Diseases

Luke Evans Excerpts

Tuesday 10th December 2024 Westminster Hall

[Dr Luke Evans (Hinckley and Bosworth) (Con)]

It is a pleasure to serve under your leadership, Dr Huq, and thank you for the introduction.

I thank the hon. Member for Strangford (Jim Shannon) for his detailed canter through a subject that needs to be highlighted. He hit the nail on the head in relation to improving clinical pathways. We, as a House, need to think about the best way to do that, and to help the NHS to do that. He exemplified that by telling Zoi’s story.

As the hon. Member for Bootle (Peter Dowd) rightly highlighted, the impact on patients is the crux of the matter, which was also personified by the hon. Member for Mid Sussex (Alison Bennett) with her story about Carrie—what she and her mother have to go through, and the difficulties they are living and breathing every single day. The co-ordination of care is so important. The hon. Member for East Londonderry (Mr Campbell), who is no longer in his place, made a timely and pointed intervention about clinicians, awareness and training.

Being a clinician, and bringing that experience to the House, I believe it is difficult to identify the issues because they are often masked by other conditions. A random screening test may conclude rheumatoid factor, anti-CCP antibodies, ESR, CRP, ANA, ANCA, and even anti-ro and anti-la. All those may be positive or negative, and can be indicative of, but not definitive about, some of those conditions. That is part of the problem we have with those rare diseases. With 170,000 people affected, they are uncommon but common enough for us to see them. I certainly have treated several patients with conditions such as systemic lupus erythematosus, Sjögren’s or Raynaud’s.

When we think about these conditions, we need to break them into two distinct groups: the connective tissue disorders, such as lupus, scleroderma, myositis and Sjögren’s, and vasculitis disorders, such as ANCA-associated vasculitis, giant cell arteritis and Behçet’s. By their nature, because they are rare, they are hard to diagnose. I hope that in the future, we may well have artificial intelligence to help clinicians to identify, or at least to think about, the differential diagnosis when it comes to dealing with those patients.

It is a broad and difficult topic to break down, so it will be helpful to look in turn at the framework to address rare diseases, the research behind it, the diagnosis, the workforce, and, finally, the treatment. A framework to help the approach is important, so under the previous Government, the UK rare diseases framework was published in 2021 to set out a vision to improve the care for people with rare diseases. It set out four priorities: delivering early diagnosis, increasing awareness among health professionals, improving access to a specialist team and providing co-ordinated care. In essence, that is the care pathway.

The framework was designed to improve the speed of diagnosis, the co-ordination of care and the access to treatment. As RAIRDA said:

“The UK rare disease framework (2021) has been a significant step in securing equity of treatment for rare diseases, and going forwards, it is crucial that the Government does not lose sight of the work done to date to drive changes for people living with rare conditions.”

Therefore, I ask the Minister my first question: how do the Government intend to build on the UK rare diseases framework to ensure that it remains adequately funded and relevant?

Next, we need the research, and that is the hardest part. As I mentioned, some of the tests cannot even diagnose conditions such as Behçet’s syndrome; it is often a clinical diagnosis. The establishment of the Genomics England project, further mapping the genetic codes of individuals with rare conditions, was a move hailed by researchers worldwide. The programme, although ostensibly broad, directly benefits patients with rare autoimmune rheumatic diseases by identifying genetic markers and enabling targeted treatments. My second question to the Minister is: what progress has been made in expanding genetic research to uncover new treatment options for such diseases?

Earlier this year, the Government published an action plan that includes significant new commitments against each of those four framework priorities, including the health inequalities that we have heard so expertly talked about today. The action plan highlighted the significant investment in driving research on the diseases, including £14 million to the Rare Disease Research UK platform. That facilitates greater collaboration between academics, clinical and industry research, as well as people living with rare diseases, research charities and other stakeholders to try to accelerate the understanding, diagnosis and therapy of these diseases. I was pleased to stand on a manifesto commitment to take forward the rare disease action plan.

I fully accept that more needs to be done, and the new Government must work closely with their delivery partners on the matter. I was pleased that in a recent written response, the Government reiterated their support for research into rare diseases. They further highlighted that the Department for Health and Social Care has invested £2.2 million to enable the National Institute of Health and Care Research to carry out research programmes related to rare genetic diseases, and of course the £340 million to Genomics England.

I did my medical training at the University of Birmingham medical school, which has the University of Birmingham Centre for Rare Disease Studies, a collaboration to try to pull together all the academic research. That is translational research. As we keep saying, these diseases are rare so, by definition, to do the trials, we need to have a wide pool to pull people together to try to work things out. I hope the hon. Member for Strangford will be interested in the fact that that university has joined with the Queen’s University Belfast to research and collaborate across the four nations, including with Newcastle University. In 2015, I had the privilege of visiting that centre, and this is a note for him to look into that. Will the Government continue to increase funding specifically for rare autoimmune rheumatic diseases, especially within the Medical Research Council’s care for rare disease programme?

Then we need to look at workforce and testing capacity. Over the last few years, the Government have allocated £2.3 billion to community diagnostic centres, of which there are almost 170 across the country. Those are really important for doing blood tests, ultrasounds, MRI scans and CT scans. In my constituency, I am lucky enough to have had £24 million invested; one is being built as we speak. That is revolutionary for our area, because for too long people had to travel to the likes of the George Eliot Medical Centre or to Leicester. Now they can have these tests in their community, providing swifter access. I hope that that will help people like Zoi, about whom we have heard, by making sure that she is one of the lucky ones who gets swift access.

Within that, we also need the people who can do the tests and understand the specialisms, so will the Minister tell us whether the Government will be expanding the network of CDCs any further? On staffing, the last Government brought forward the NHS workforce plan. How are this Government looking at addressing rheumatology and radiology in that plan to make sure there are no gaps?

Treatment is the one thing we are looking for. We have the diagnosis, but we need the treatment. Innovative drugs are coming, including immunotherapies, but they often come with high price tags. NICE is looking at how to speed things up, but will the Government commit to accelerating the processes so that we can make sure people get these innovative drugs as quickly as possible? We should not forget that standard drugs are used as well, including methotrexate. They can be quite dangerous, so I ask the Government what they are doing to ensure safe use of such drugs. Disease-modifying medications are important, but they can have high toxicity if not used properly, so they can cause harm. Safety is really important.

The previous Government’s legacy is one of frameworks being established, investment being made and a road to improve lives. For the 2024 general election, RAIRDA published a manifesto that called on the Government to ensure that rare diseases remain a priority, to develop a quality standard for rare diseases and to develop better support for specialist networks. How will the Government work to consider and address those points? I hope this debate has highlighted exactly those calls, because we unanimously agree that this is what we need: research, networks, support and treatments for the individuals who are suffering.

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

It is a pleasure to serve under your chairmanship, Dr Huq. I thank the hon. Member for Strangford (Jim Shannon)—I want to call him an hon. Friend because he is a friend, but convention dictates that I must call him an hon. Member—and I welcome the fact that he cares so much about health-related issues. I now see him more than I see my wife, because he is always in debates about a whole range of health conditions, and he brings so much passion to those debates. Importantly, he highlights rare diseases. I thank him for the way he made his case this morning, and for speaking about Zoi’s experience. When we humanise these things, we make them all the more impactful.

I thank my hon. Friend the Member for Bootle (Peter Dowd) for his contributions, and I thank the Liberal Democrat spokesperson, the hon. Member for Mid Sussex (Alison Bennett), for humanising the issue through Carrie’s story; that is crucial. The shadow Minister, the hon. Member for Hinckley and Bosworth (Dr Evans), brings his professional experience to this debate, and that cannot be underestimated. I confess that I am not a medical professional, but in health debates it is important to listen to the expertise of those who work in the sector and on the frontline. I thank him genuinely for the way he has approached the debate. This is not a party political, knockabout debate; it is something on which we all want to see progress. The beauty of Westminster Hall is that we can leave the knockabout to the main Chamber, and in this room we can get into the detail of important subjects that are often overlooked. I pay tribute to those who are affected by rare disease, including rare autoimmune rheumatic diseases, and to their families.

The work of patient organisations such as RAIRDA is vital in raising awareness and campaigning to improve the lives of people who are living with rare diseases, and I thank those who dedicate their lives to this community. It is important to make the point that although rare diseases are individually rare, they are collectively common. One in 17 people will be affected by a rare condition over their lifetime. People living with rare diseases may face additional challenges in accessing health and social care. As the hon. Member for Mid Sussex said, this applies to a whole range of health services, including dentistry, and I hope that the Minister responsible for dentistry will pick that up. I will ensure that he receives her comments, because dentistry is often overlooked when it comes to people with rare conditions.

We are committed to improving the lives of people who are living with rare conditions. As the hon. Member for Strangford mentions, the UK rare diseases framework outlines four priorities to achieve this aim: helping patients to get a final diagnosis faster; increasing awareness of rare diseases among healthcare professionals; bettering co-ordination of care; and improving access to specialist care, treatments and drugs. Rare diseases are a priority for the Government. In England, we publish a rare diseases action plan annually, which details the specific steps we are taking to meet the shared priorities of the framework. Each action has an owner, desired outcomes and detail about how we will measure and report on progress. This Government are committed to delivering on the priorities framework, and we are working to publish the next England action plan in early 2025.

The UK rare diseases framework comes to an end in 2026, and I know that the rare disease community would like the policy to continue, to maintain the momentum and progress made over the lifetime of the previous framework. It is UK-wide and agreed across the devolved nations, and I am more than happy to discuss it further with colleagues in Wales and Scotland and, for the hon. Member for Strangford, with Mike Nesbitt, the Health Minister in Northern Ireland. I am the UK Health Minister with responsibility for engagement with the devolved Administrations when it comes to health and social care; indeed, we have a meeting with them and with the Secretary of State tomorrow to discuss a whole range of subjects. I am more than happy to discuss this issue further with colleagues to see if we can maintain four-nation co-ordination in this area. I believe that if we can do so, we should. I give the hon. Member for Strangford my commitment that I will take the matter up with the devolved Health Ministers to see if we can continue the four-nation approach.

In England, I am committed to working towards the four priorities of the framework, which were identified through the 2019 national conversation on rare diseases. Alongside the evaluation of England’s rare disease action plans commissioned through NIHR, the Department will undertake engagement next year to inform future policy decisions. The Government are committed to providing the best diagnosis and care for rare diseases, as set out in the UK rare diseases framework. Good diagnosis should be timely and accurate, and I know that people living with rare diseases often face journeys that are years long—diagnostic odysseys—before they receive an answer.

As the shadow Minister set out, many health professionals are involved in a patient’s journey, from those in specialist testing and genetic screening to GPs and primary care professionals. Raising awareness of rare conditions among those professionals is one way in which we can help to speed up diagnosis. I know that every experience of living with a rare disease is unique, and, with more than 7,000 identified rare diseases, we focus on addressing shared challenges across all rare diseases.

Although the increasing use of genetic testing is an groundbreaking tool in diagnosis, many conditions, including rare rheumatic autoimmune diseases, do not have an identified genetic component, so it is important that overall awareness, diagnostics and quality of care continue to serve all people living with rare conditions. NHS England is working to improve awareness of rare diseases among healthcare professionals, including those in primary care, through the NHS England genomics education programme, which includes non-genetic rare diseases. The GEP provides education and training to support the specialist and wider workforce to diagnose rare conditions early and to know how to deliver the best possible care for patients and families—the shadow Minister mentioned that. Working with partners such as Medics 4 Rare Diseases, the GEP has created genomic notes for clinicians, GeNotes, an innovative digital educational resource for healthcare professionals. The GEP works to provide information to GPs where and when they need it—for example, by presenting at primary care educational events, producing blended learning modules for GP trainees or ensuring regular reviews of the curriculum of the Royal College of General Practitioners.

The shadow Minister rightly mentioned research. I reassure him that the Department of Health and Social Care—this started on the previous Government’s watch, and we rightly are continuing the progress—supports research into rare diseases through the NIHR. The NIHR is the nation’s largest funder of health and care research, and it welcomes funding applications for research into any aspect of human health, including rare diseases. The usual practice of the NIHR and other research funders is not to ringfence funds for expenditure on particular topics. The “Rare Diseases Research Landscape Project Report” described investment of almost £630 million from MRC and NIHR programmes in rare disease research over five years. We are now working with the rare diseases community to further understand the gaps and the priorities, and to get them into those research pathways so that we can, we hope, fill the gaps.

As many rare diseases are chronic and affect multiple body systems, those living with rare disease face complex condition management, and interact with many specialists and providers of health and social care. That can include travelling across the country to access highly specialised care from experts. All of that can add up to a significant emotional and physical burden, and deepens existing inequalities. Co-ordination of care is essential to ensure that care is effectively managed, that the burden on patients and their carers is minimised and that healthcare professionals are working together to provide the best possible joined-up and high-quality care.

Last year, we hosted a workshop with RAIRDA to explore how best to support people living with “non-genetic” rare diseases. That highlighted the importance of specialised networks of care in delivering high-quality care at value for money. As we heard from the hon. Member for Strangford, networks, such as the Eastern Network for Rare Autoimmune Disease, are an example of best practice. I encourage integrated care boards to consider similar models across the whole country for types of rare diseases. I am more than happy to look closely at how we can seek to spread that best practice across the country, across different rare disease types and across ICBs, because patients with rare conditions deserve the same quality, safety and efficacy in medicines as other patients with more common conditions.

NICE, the MHRA and NHS England are working to understand and to address challenges preventing treatments for rare conditions from reaching patients who need them. I take on board precisely the points that the shadow Minister raises about the new drugs, how we ensure faster access and how we create the environment whereby clinical trials are more readily available in the United Kingdom. I want to assure Members that that is a central part not just of our health mission but of the Government’s economic mission, because we want the United Kingdom to be a base for investment in life sciences, in medtech and in access to clinical trials, so that our patients win as well as our economy. We have to ensure that safety is foremost in our deliberations. Safety is paramount, and we must ensure, in whatever regulatory regime that we have to encourage the life sciences, medtech and data industries into the UK, that safety is never compromised. I take on board fully the comments made by the shadow Minister.

NICE has also been working with RAIRDA to create a quality standard for rare diseases. That will find commonalities across the more than 7,000 identified rare diseases to develop standards that will drive quality improvement across multiple rare disease groups. Although the majority of rare diseases are genetic, others, such as rare autoimmune rheumatic diseases, do not yet have an identified genetic cause, as I said. A study by Genetic Alliance UK suggests that such conditions often have higher prevalence, impacting on a significant number of people, so it is important that both genetic and non-genetic conditions are considered.

Approximately 3.5 million people in the UK live with a rare condition, and addressing shared challenges across all conditions will be central to this Government’s approach. In addition, shared challenges across the health and social care system are often exacerbated for people living with rare diseases, such as access to mental health support—something else that the hon. Member for Mid Sussex mentioned. A central mission of this Government is to build a health and care system fit for the future.

The hon. Member for Strangford referred to our 10-year health plan. I reassure the House that that is intended to focus on the three shifts needed to deliver a modern NHS—not just fixing our NHS, but making it fit for the future, for the next 10, 20 or 30 years, putting it on a modernised footing as well as fixing the fundamentals. The three shifts are moving from hospital to community, from analogue to digital and from sickness to prevention. Those shifts offer opportunities to improve time to diagnosis and care for people living with rare diseases. Many highly specialised services for rare diseases must be delivered in hospitals to ensure the high standards of expert care that we want to see, but we can improve co-ordination of care to deliver better treatments closer to where people live, where possible. While many rare diseases are not preventable, early diagnosis can lead to interventions that improve health outcomes.

On the point made by the shadow Minister about community diagnostic centres, the Government’s commitment is to continue that programme. Indeed, I have seen the benefits of it myself—I got to open the new CDC at Crownpoint in Denton in my constituency in July. It is already having a game-changing impact on the local community, giving faster diagnosis and getting people into treatment more quickly, with better outcomes and better patient experiences for those who access the facilities.

The 10-year plan will ensure a better health service for everyone, regardless of condition or service area. On 21 October, we launched a national conversation on the future of the NHS, inviting views from across the country on how to deliver a health service fit for the future. Patients, staff and organisations can make themselves heard by logging on to the online portal, change.nhs.uk. I encourage hon. Members to do the same and to encourage their constituents to do likewise, if they have not done so already.

Unmet need remains, however, for people living with rare diseases, including rare autoimmune rheumatic conditions. I reaffirm that I am deeply committed, as is this Government, to working across the health and care system and with the rare disease community to address that need.

Finally, on workforce, the hon. Member for Strangford and other Members asked if the goal of the Government is to ensure that a patient gets the treatment, and that we get that treatment with the workforce we have. Getting that right workforce will be key. I reassure Members that the goal of the Government is to ensure that the patient, as they deserve, gets all the help that the NHS can offer in treatment, care and support.

The 10-year health plan will deliver those three big shifts on hospitals to community, analogue to digital, and sickness to prevention. To support delivery of the plan, the Secretary of State has confirmed that next summer we will refresh the NHS long-term workforce plan. That will help to ensure that the NHS has the right people in the right places with the right skills to deliver the care that patients need when they need it, not just today but in the future. The shifts we want to see in the delivery of healthcare will require us to rethink the kind of workforce we need in 10 years’ time.

[Dr Luke Evans]

I am grateful to the Minister for acknowledging the workforce, and for looking at the workforce plan. I was aware of the Health Secretary’s plan to revisit this, and the Minister talks about it being done next year. Does he have a timescale for how long the review will take? The danger, especially in healthcare, is that modernisation happens so quickly that, by the time we review something, it is already out of date and needs another review. This is always a chicken-and-egg situation. I would be grateful for a timescale.

[Andrew Gwynne]

We will refresh it next summer, and the Department is already beginning to think about whether this is what the shifts are intended to bring about, and whether these are the outcomes we want to see as a result of those shifts. If we are to have a neighbourhood health service that delivers much more in a community setting, how do we ensure we have the right skills and the right workforce to deliver that?

Particularly with the shift from analogue to digital, we will need a lot more tech-savvy clinicians, too. How do we build in some of the massive advances in artificial intelligence into medical devices and medical technology? We will be doing that concurrently with the 10-year plan to make sure that the workforce plan refresh is ready to go. This will allow us to embed the future, not just today’s practices, into the training and recruitment processes for the immediate future. The refresh will begin next summer, but it is a chicken-and-egg situation. We need to work out what the future of the NHS will look like, and then we have to ensure that we have the skills to meet that ambition—not just for today, but for the future.

In closing, I again thank my friend, the hon. Member for Strangford, for raising such an important matter, and I thank the rare diseases community for their continued and constructive engagement with the Government to help bring about meaningful change. I hope I have reassured the hon. Gentleman both on cross-UK working—and I take up his challenge to try to get colleagues across the devolved Administrations to agree to continue a UK-wide approach—and on my specific responsibility here in England. We will take forward the four areas identified in the UK plan. We will have a new plan for England, and we will seek to make the significant progress that I believe all Members of this House want to see happen.

I am more than happy to work collegiately with Members across the House, whose role is to scrutinise the Government, to hold our feet to the coals and to make sure we do what is in the plan at the best speed and pace for people living with these conditions. I also accept that I am not the sole fount of all wisdom in this area.

[Dr Luke Evans]

No!

[Andrew Gwynne]

I know the shadow Minister is surprised by that. Genuinely, whatever people bring to the table, whether it is personal experience, professional expertise or their constituents’ stories, we need to share that knowledge so that we can improve how we deliver the outcomes we want to see for people living with rare diseases. I stand willing and ready to work with hon. Members across the House, and indeed with organisations that champion this area, so we can get the best outcomes that people deserve.

Lobular Breast Cancer

Luke Evans Excerpts

Tuesday 10th December 2024 Westminster Hall

[Dr Luke Evans (Hinckley and Bosworth) (Con)]

It is a pleasure and an honour to serve under your stewardship, Ms Vaz, and even more of an honour to be part of this debate. I pay tribute to the hon. Member for Dulwich and West Norwood (Helen Hayes). Not only was her speech emotional, but it was powerful. Cressida, I am sure, is incredibly proud and Heather would be even more proud. That is because the hon. Lady has really done the subject justice today, not only by securing this debate but by bringing the whole room together and highlighting the most salient points. Often in these debates, there is a lot to cover, and the hon. Lady has done it with aplomb.

I also thank my hon. Friend the Member for Maidstone and Malling (Helen Grant) and the hon. Member for City of Durham (Mary Kelly Foy) for speaking up about their personal experiences. That is tough to do, and it is a testament to their constituents that they have put on record, in public, the trials and tribulations they have been through. It is important that people feel they can advocate in this space and lead by example in doing so.

That leads me on to the hon. Member for Bexleyheath and Crayford (Daniel Francis), who talked about his wife. He is an example of how important it is to have a powerful advocate. Partners and families do exactly that: they advocate for patients who are going through treatment. The fact that he is doing that here as well is incredibly powerful.

The hon. Member for Strangford (Jim Shannon) and I are starting to have regular conversations about health in Westminster Hall debates, with an hour and a half this morning and another hour and a half this afternoon. His passion for health topics is probably only superseded by the volumes of Hansard content he accounts for. He talked about networks, and in research it is important to make sure that we are bringing together the best brains from across the field for the biggest possible research pools. That is much needed.

I congratulate the hon. Member for Horsham (John Milne) on highlighting hope. The danger is that we spend too much time talking about difficulties, when over the past couple of decades, breast cancer actually provides a good story of how far advances have been made and survival rates improved. It is important that we point that out, so that not all is doom and gloom. There are fantastic survival rates for breast cancer, for example.

The hon. Gentleman paid tribute to Dr Susan Michaelis, as did the hon. Member for Wokingham (Clive Jones). As MPs, we are lobbied a lot, so to have got so many MPs signed up and to have secured debates here repeatedly, month on month and year on year, is an incredible testament to the character of Dr Michaelis.

The Lib Dem spokesperson, the hon. Member for North Shropshire (Helen Morgan), rightly highlighted access. When it comes to making sure we get diagnoses, access is key. The last Government rolled out community diagnostic centres—almost 170 of them. When it comes to diseases such as breast cancer, I hope that new MRI and CT scanners will become available, allowing us to have better screening pathways, because that is what often limits a screening programme. That access is now being widened so dramatically, with the Government confirming this morning that they are continuing with it, is a sign of great cross-party working, which we all know the NHS needs.

Much has been said about lobular breast cancer in this debate, and for me it matters because of the way it presents. One can take the doctor out of medicine but not the medicine out of the doctor, so I will use this opportunity to ensure that people are aware that they should regularly check their breasts. They should look for lumps but also for skin changes, or what we call peau d’orange—it looks a little like orange peel—on the breast. They should also look for slight changes, a little bit of discharge or blood. Lumps, bumps and discharge do not mean an individual has cancer; it simply means they need to be assessed.

One of the great things about the set-up in this country is that it is quick and accessible—a good success story—but we need to ensure that people feel comfortable and able to come forward. Cases have been highlighted where clinicians did not seem to trust women. It is important that clinicians trust women’s instincts. Women know their own breasts, and when they are aware of changes, they must be taken seriously. We have a chance through clinical pathways to do that, which is important.

We heard that 22 women a day in the UK are diagnosed with lobular breast cancer. As someone who has given that diagnosis, my next piece of advice for anyone unfortunate enough to receive a diagnosis of breast cancer is to ask whether it is lobular or ductal. That is often forgotten. As a clinician, I have never been asked that question, but it would help to change the narrative of expectations about what treatments may be available, and promote understanding. If a patient speaks to someone else with breast cancer, they might wonder why their treatment is different. It is important to educate people, not in a condescending way, but to appreciate the general difference. Treatments are becoming so specialised and nuanced that all will not be the same, and that can be quite disconcerting.

I pay tribute to those who are battling lobular cancer, the cancer survivors and the campaigners from Lobular Breast Cancer UK for their tireless work in raising the issue. Of course, the ultimate goal is to have a cure for lobular breast cancer. Advances in medical research and treatment options are moving us closer to that goal. In 2022, the Government invested £29 million into the Institute for Cancer Research and the Royal Marsden biomedical research centre to support research into cancer, including lobular breast cancer. That included a £1.3 million project to determine whether abbreviated forms of breast MRI can detect breast cancers missed in screening. That links to the point about having more MRI scanners, which might well enable better research to determine the way to pick these things up and improve the ability to deliver.

I am pleased the previous Government supported, through the National Institute for Health and Care Research clinical research network, 10 further lobular breast cancer-related studies. I am also reassured by the Lobular Moon Shot Project, which we have heard a lot about. I pay tribute to the former Member for Horsham, Sir Jeremy Quin, who did a lot to raise that issue. I am pleased to see the new hon. Member for Horsham standing in his shoes to raise it now. It would be useful to know if the £20 million for the five-year study is being looked at by the Government. It was raised several times with the previous Government, but an election got in the way and power changed hands. It would be interesting to see if the proposals have been reviewed and merit the Government taking them forward.

A key measure that has been missed to some extent is guidelines. Lobular Breast Cancer UK is to launch a campaign calling for national breast cancer guidelines to be updated to recognise lobular breast cancer. Will the Minister commit to reviewing and updating the guidelines with the National Institute for Health and Care Excellence? We have also heard about devolved powers. Scotland, for instance, has the Scottish Intercollegiate Guidelines Network. It would be useful to know whether the Minister will raise this issue with the devolved nations to ensure we have a joined-up approach, without any cross-boundary difficulties.

I do not want to turn this into a political battle because this is not the place, but I put it gently to the Minister that we have heard about the need for support, a lot of which comes from charities. The changes in national insurance contributions for employers have hit charities, including the likes of Breast Cancer Now, Macmillan and Marie Curie. They are not shielded from the rises. I will be grateful if the Minister considers raising with Treasury what can be done to help support those crucial nurses, advice lines and workers, so as to make sure that when people are going through these difficulties—we have heard how complex the scene can be, particularly in breast cancer—advice is accessible to all.

I thank all those who took part in this debate, and I remind people to regularly examine their breasts. If there is a change, seek help. If a diagnosis of cancer is given, ask if it is lobular or ductal. Finally, remember that no one is alone. As we have heard today, many people suffer from cancer and there is support out there—from the NHS, charities, family and friends—so do not be fearful. Speak out and get that support.

--- Later in debate ---

[Karin Smyth]

I thank the hon. Lady for that really important point. She highlights another important issue affecting the health of women and children, and I agree with her.

My hon. Friend the Member for Dulwich and West Norwood spoke about women’s health overall, which is an important priority for this Government, as are these forms of cancer and the wider preventive agenda. That is another point that can be made on the change.nhs.uk website, which I will keep plugging. The issues that have been raised on it by the public and staff are really interesting and informative.

My right hon. Friend the Secretary of State has been clear that there should be a national cancer plan. The hon. Member for Wokingham (Clive Jones) made helpful points about that opportunity. I will not take up his invitation for a meeting; his point would be better made by being inputted into the process with the organisations he is in touch with. That would help to shape the national cancer plan, which we can all buy into as a country. The plan will include more details about how to improve outcomes for all tumour types, including lobular breast cancer, and ensure that patients have access to the latest treatments and technology. We are now in discussions about what form that plan should take and what its relationship with the 10-year health plan and the Government’s wider health missions should be. We will provide updates on that in due course.

I thank my hon. Friend the Member for Dulwich and West Norwood for bringing this important matter to the House.

[Dr Evans]

I want to draw the Minister’s attention to the point about guidelines. Will she consider speaking to the devolved nations and, in England, to NICE, about guidance on lobular breast cancer?

[Karin Smyth]

I was going to come to that. I am not fully au fait with the change in guidelines that the hon. Gentleman referred to, so I will happily take that point away. He made a wider point about aligning across the devolved regions. Obviously, some of these issues are devolved and we have to respect the devolution arrangements. On the wider research, we should learn from each other, understanding that we have similar patient cohorts. There is lots of good medical work going on, and the Government are determined to work respectfully across the devolved nations. I will ensure that the hon. Gentleman gets a written answer on the specifics of his question.

Heartbreaking stories such as Heather’s remind us that diseases such as lobular breast cancer are complex. They are hard to catch, and therefore treat. Such tragic losses are a wake-up call for us all, and I commend all hon. Members for raising those stories. For people listening in, as well as those who have attended the debate, they are an important way to raise awareness. We are grateful to those who have shared their personal stories, which help us get the NHS back on its feet so that we can better serve the people who need it.

Improving cancer survival requires a multi-pronged approach to ensure that patients have timely access to effective treatments, built on the foundations of world-class research. We have already taken immediate steps to allow cancer patients to benefit from the most up-to-date technology. Through the recent Budget, we committed to surgical hubs and scanners to allow for 30,000 more procedures each year, and we are increasing capacity for tests. We have also committed another £70 million for radiotherapy machines. Lots of hon. Members have raised those points. I have outlined several measures today, and I assure Members that improving outcomes for cancer patients, including those with lobular breast cancer, remains a top priority for this Government.

Oral Answers to Questions

Luke Evans Excerpts

Tuesday 19th November 2024 Commons Chamber

[Mr Speaker]

I call the shadow Minister.

[Dr Luke Evans (Hinckley and Bosworth) (Con)]

The Royal College of General Practitioners has said the national insurance tax increase is expected to cost 2.2 million appointments. We know from answers to written questions that have been submitted that GPs, hospices and care homes are not exempt from the increases, and will not find out until April what, if any, mitigation will be put in place, so cutbacks are now being planned. Will the Secretary of State explain how his choice to tax GPs will increase GP access?

[Wes Streeting]

I can reassure health and care providers that we will be setting out allocations long before April next year. I recognise that people need to plan ahead of the new financial year. When deciding allocations, we take into account the range of pressures on different parts of the system. People have heard what I have said already about the need to shift out of hospital into primary and community services. The shadow Minister talks about choices; Conservative Members seem to welcome the £26 billion investment, but oppose the means of raising it. I am afraid they cannot do both. If they support the investment, they need to support the way in which we raise the money; if they do not support the way in which we raise the money, they need to spell out how they would raise it or be honest about the fact that if they were still in government, they would continue to preside over a mismanaged decline.

[Dr Evans]

One GP described the situation as “Schrödinger’s primary care”: GPs are seen as private contractors, so not exempt from the NI increases, but they are exempt from the small business relief because they are deemed to be “public”. Did the Department of Health team knowingly go along with the Treasury team’s plan to tax primary care without mitigation, leading to cuts? Or did it not understand or spot the complexity of what is going on, so mitigations have to be put in place now? Which is it?

[Wes Streeting]

I was terribly impolite; I should have welcomed the shadow Minister to his place in response to his first question.

Conservative Members seem to welcome the £26 billion investment and are happy to tell us how it should be spent, but they oppose the means of raising it. They cannot do all those things. They need to be honest with the country: either they support the investment in the NHS or they say they would cut it. Which is it?