Health Bill (Fifteenth sitting)

Caroline Johnson Excerpts

Committee stage
Thursday 9th July 2026 Public Bill Committees

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

I rise to speak to new clauses 14, 79 and 80, tabled by the Liberal Democrats. New clause 14 would require the Secretary of State, within six months, to establish a statutory target for healthy life expectancy in England and then to produce a strategy every two years to meet that target. This is not the first time the House has heard about life expectancy targets; as I am sure you will remember, Ms Lewell, the previous Government’s 2022 levelling-up White Paper talked about narrowing the gap in healthy life expectancy between the areas where it is highest and lowest, and aimed for healthy life expectancy to rise.

As the hon. Member for Winchester said, life expectancy has increased quite dramatically over the last century, but that is largely due to improvements in child mortality. That is a good thing, but it is worth looking at how healthy life expectancy is calculated. The Sullivan method starts by looking at mortality rates over a specific timeframe for a specific population, and then takes data from a cross-sectional study where people are asked to rate their own health, multiplies them together and produces a figure for healthy life years. Therefore, the main element that separates healthy life expectancy from unhealthy life expectancy is survey responses; it is not a clinical metric. If somebody on a huge amount of medication and treatment feels healthy, they are healthy. If someone on very minor treatment feels unhealthy, they are unhealthy. It is a self-reported measure.

The Government’s website says that if mortality improves by 2%, healthy life expectancy increases a very small amount; if self-reported feeling healthy goes up 2%, there is a much bigger increase in healthy life expectancy. We want people not just to live longer but to live well, but it is a case of how we measure it and how we ensure that there are no perverse incentives. We should look at it over time in the same individuals. How do people feel when they get up in the winter, when it is cold, dark, raining or icy? They may feel less healthy than when the sun is shining, it is the weekend or England have won the world cup.

The Government’s own figures show that musculoskeletal health is particularly important. Musculoskeletal conditions are prevalent among 17.2% of the population, and people with them are three times more likely to have self-reported ill health. We have asked before if the Government will introduce a modern service framework on musculoskeletal disease, having scrapped our long-term conditions strategy. I would be grateful if the Minister could say whether the Government have given more consideration to that and are now willing to do an MSF on musculoskeletal health.

New clause 79 would require the Government to create a committee across Government, including the Prime Minister, all Cabinet members and one Minister from each Department. The idea behind the new clause—that we need to work together—is important, but I would be grateful for the Minister’s comments on how feasible, practical and effective that would be.

Finally, new clause 80 concerns the duty to promote public health. Of course, it is the Minister’s duty to do his or her job, and part of that is promoting public health. What does the Minister think the practical effects of that new clause would be on bureaucracy in Departments?

[Dave Robertson (Lichfield) (Lab)]

It is always a pleasure to see you in the Chair, Ms Lewell. I will speak briefly on new clauses 79 and 80. I really like the intent of these new clauses, and the idea of Government working better and more together, public health being more of an agenda, and trying to get people working together in that framework. I am pretty sure that every Member in the House would support that. I do, however, have some serious concerns about the wording.

New clause 79 proposes a new committee, whose membership would include at least one Minister from each Department and all Cabinet Ministers—I presume that that is in addition, so it would be all Cabinet members plus one other Minister from each Department, which makes it seem like quite an unwieldy committee. There comes a point when a committee, if it has 70 people in it, ceases to be a committee, particularly when it will also need to be chaired, have clerks and have various people in the room. I have concerns about its size. I also have concerns about the frequency with which it would meet, and the requirement that every single Cabinet Minister must attend a minimum of three times a year, which is the implication of the wording.

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[Karin Smyth]

I thank my hon. Friend for that point about prevalence in the north-east. Often, the prevalence of these diseases is also to do with post-industrial work, which many people had to do without concern or knowledge about the effects on their health.

My hon. Friend the Member for Croydon East mentioned practical examples as well: the opening and building of things such as community diagnostic centres in places that are accessible and open to the public, and neighbourhood health. That is entirely the drive that we have: for services where people are, and where the greatest health need is, and not expecting people to travel.

In terms of smoking, one of the greatest legacies of the last Labour Government was of course the ban on indoor smoking. My mother was a barmaid for all her adult life; it is hard to imagine that people were just standing there at her place of work, blowing smoke at her while she was working. I tell my children, “Yes, we used to sit on aeroplanes with people smoking,” and that, unbelievably, some people smoked at the back of buses on the way back from school, and so on and so forth. It is really quite shocking.

The Tobacco and Vapes Act 2026, which we have also talked about in this Committee, is also a real testament to the work of this House, but didn’t it take a long time, Ms Lewell? I pay tribute to the right hon. Member for Richmond and Northallerton (Rishi Sunak) for pursuing that in the face of great adversity from his own party at the time. That was not, obviously, by the Members present, who all have a high concern about health, but perhaps by others on the Conservative Benches at the time, and then indeed in the Lords, who sought to thwart it—thwart is a strong word in this context; obviously, they made their points, but they sought to stop that Bill making progress at various stages.

Some of my colleagues were coming back at different times, saying that they were working on the Tobacco and Vapes Bill, and I said, “What, still? Really? Has it not come through yet?” That showed how hard it is, when something so well evidenced and so supported by public health experts, on something so detrimental to public health—particularly for people living in poorer communities, such as the one I represent in Bristol South—still takes such a time to get through.

[Dr Johnson]

The Minister is very, very aware of my views and opinions on the Tobacco and Vapes Act, particularly on vaping and stopping vaping among children. That Act, a bit like this Bill, left lots of opportunities for the Government to provide for regulations. Anyone who has been in a shop in the past few days will have seen vapes still behind the counter, still very visible, very colourful and in lots of different flavours and suchlike. Can the Minister update the Committee, and therefore the House, on when she expects the regulations provided for by the Tobacco and Vapes Act to come into force, so that we can actually apply the law, as opposed to just having it sat on the statute book?

[Karin Smyth]

Well, I thank the hon. Member for her support. As I said, I did not expect that people here present, who understand the impact of that work, were the ones who were thwarting that. I do not have off the top of my head exactly when the regulations under that Act will come forward, but I am sure we can furnish the hon. Member with details as soon as possible. We all want to see that happening—in particular, the work going on around high streets, such as prevention of fraud by shops for all sorts of things, not just vapes. Obviously, that is high on the agenda, as it is for some of my colleagues as well. Those places and people are blighting our high streets.

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[Karin Smyth]

I thank my hon. Friend for his expertise and that work on the Home Affairs Committee. Again, it shows the Committee the wide range of work that goes on. Of course, many hon. Members are campaigning and working hard. Those shops are blights on our communities, and as with most illicit drug dealing, they affect the most vulnerable in places where they can pick on the most vulnerable. They are in areas of high deprivation, and that is something we need to stop. I commend all the communities and community leaders that work so hard to stop that happening in their areas. We must address it.

Returning to new clause 14, while I fully recognise and share the ambition that sits behind the new clause, introducing a new statutory duty is not the right way to achieve it. A healthy life expectancy is a long-term outcome shaped by a wide range of factors across society and Government, many of which cannot be meaningfully addressed through a rigid statutory timetable. Requiring the Secretary of State to set a statutory target within six months, publish a refreshed cross-Government strategy every two years and make formal statements to Parliament risks creating a process-heavy framework that prioritises reporting over delivery.

What matters most is sustained practical action to improve prevention, tackle health inequalities, expand access to care and address those wider determinants of health. That is why the Government have already published our 10-year health plan to improve the nation’s health, of which healthy life expectancy is one measure. That is central to us in bringing forward the 10-year plan. Publishing a new strategy every two years would be duplicative and would not help to deliver the plan that we already have in place. Work is already underway, and I am sure the House will hold us to account for the progress we make, as it rightly should. I believe we share the same aim that the new clause seeks, but we differ on the best means to get there.

On new clause 79, I assure the Committee that the Government are already working across Departments to improve health and reduce inequalities, ensuring that action on health is embedded across Government. For example, through the warm homes plan and rented sector reform, we are supporting healthier homes and reducing health harms associated with poor housing. Through the “Keep Britain Working” review, we are addressing the links between work, health and wellbeing. Through the environment improvement plan, we are tackling the health harms of air pollution, and in lifting hundreds of children out of poverty, we will transform their health and life chances.

Those endeavours demonstrate that improving health outcomes is already embedded across Government activity and does not depend on the creation of a new statutory committee. While I have considerable sympathy with the aim of the new clause, and I am a strong supporter, as I hope I have assured the Committee, of supporting those wider determinants of health, I am not persuaded that placing detailed internal Government structures into primary legislation is either necessary or desirable. We heard well from my hon. Friend the Member for Lichfield about some of the unintended complications about the new clause.

As we have repeatedly said, in the Bill we are not seeking to be unduly prescriptive or create unnecessary bureaucracy that may risk slowing down delivery. Indeed, we are aiming to reduce that bureaucracy. Furthermore, the Government must retain the flexibility to organise in a way that best supports delivery as the context evolves. The Government already bring Departments together to advance shared goals and will continue to strengthen collaboration wherever it is needed.

On new clause 80, I am again not convinced that creating a new statutory duty on every Minister is either necessary or the most effective means of achieving the objective of the hon. Member for Winchester. The Secretary of State for Health and Social Care already has a statutory duty to protect public health and powers to take the appropriate steps to improve the health of the people of England. We have already discussed clause 4, which reformulates the Secretary of State’s duty on health inequalities. Those provide a clear statutory framework for improving health and addressing inequalities.

Beyond that, the Government do not operate in departmental silos. Ministers consider the implications of decisions and work collectively in the public interest, including on health impacts where relevant, which is particularly important to this Government. The proof is in the action we have started to take across Government to improve health. Although I agree entirely that health should be considered across Government, imposing a broad new legal duty on every Minister would risk creating unnecessary bureaucracy without meaningfully improving outcomes, as my hon. Friend the Member for Lichfield highlighted.

Creating new procedure and reporting requirements is not in the spirit of this Bill, which has flexibility and a focus on delivery at its heart. We also heard that from the shadow Minister. Our focus is and must remain on delivering improvements in health outcomes, supporting prevention and tackling the causes of ill health, rather than creating additional statutory red tape. The objective of new clause 80 can be achieved without placing a new statutory requirement on every Minister.

The shadow Minister asked me about plans for a modern service framework for MSK, and we currently do not have plans to develop one. The national quality board will assess all proposals for new MSFs against clear criteria, which we have highlighted before, ensuring that we prioritise the area where a framework will have the greatest impact for patients.

[Dr Johnson]

I understood that one of the Government’s greatest priorities was to reduce waiting lists, but one of the things that people are waiting for the most is musculoskeletal or orthopaedic treatment. Why is it not a priority for the Government?

[Karin Smyth]

There is a long priority list for MSFs that was left by the last Government for different reasons. There are lots of things will bring down MSK waiting lists, such as more diagnostic facilities. As the shadow Minister knows, 80% of people on the waiting list are waiting for diagnostics, which is why we are fast-tracking and pushing more. As my hon. Friend the Member for Croydon East said, community diagnostic centres in places such as Croydon East will get people through for the diagnostics they need. There are also some things that the shadow Minister’s party seems to continue to oppose, such as advice and guidance for GPs so that, if there are alternatives to deal with MSK, of which there is already a lot of evidence, they can refer people to a more appropriate or faster access route in the meantime. Those actions are being taken.

She is quite right that orthopaedics is a large part of the waiting list. However, diagnostics, access to faster treatment and using the independent sector where appropriate will particularly target orthopaedic waiting lists as part of our elective reform plan.

[Dr Johnson]

I am not opposed to the principle of GPs seeking advice or guidance; the issue is the compulsory nature of that and GPs not being able to refer.

[Karin Smyth]

The shadow Minister is tempting me to divert away from addressing the main point, but I will take her point on board. I am glad that the Conservatives do not oppose the principle of advice and guidance, because evidence suggests that it is a good route to patients having care closer to home and getting faster treatment. She knows this because it has been clarified, but if there is any doubt: there is no compulsion on GPs to do that.

The hon. Member for Winchester talked about his expertise and blowing his own trumpet with regard to antimicrobial resistance. He jests slightly about that expertise, but he raises a really important point about AMR that I am sure we will talk about more when we discuss new clause 32. He is absolutely right that it is an important public health issue that crosses many divides, and I look forward to discussing that later.

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[Dr Chambers]

New clause 15 would require that the Secretary of State lay before Parliament any trade negotiation requiring NHS spending or funding exceeding £100 million, in the form of regulations subject to the affirmative procedure. New clause 76 would require that the arrangement between the United States and the United Kingdom on pharmaceutical pricing be laid before the House to be voted on.

The Institute for Fiscal Studies has indicated that, by 2036, the UK-US pharmaceuticals deal will have cost as much as £9 billion. That money could be transformative for the NHS. It could be put towards ending corridor care, as the Committee discussed earlier, or towards hiring thousands of ward staff, buying countless radiotherapy machines and starting to deliver high-quality care and help at home for the elderly and disabled.

To make matters worse, Trump’s ambassador hauled in the head of the National Institute for Health and Care Excellence—the expert independent body that considers value for money in the NHS—to rebuke him over his opposition to the deal. It is utterly outrageous that a British public servant has been dressed down by a foreign regime for putting the interests of British patients and the British taxpayer first. It is crazy that billions of pounds of NHS funding is being spent to placate Trump, at the expense of the patient wellbeing. We want to support the British life sciences sector. That should be a domestic matter for the UK Government to address holistically, through negotiations with the sector; it should not be dictated from Washington.

Hiking payments for medicine is the wrong approach for patients who badly need investment in frontline staff, hospitals and equipment. The lack of transparency over the full cost has already created great uncertainty in the sector, and it is astonishing that such a major decision will be made without the say of the British people via a vote in Parliament. The Government refused even to publish an assessment of the impact of the deal, which has raised suspicion and caused some to think that something is being hidden. Through the people who elected us, this House—not the White House—decides on matters of national importance. The Liberal Democrats have tabled these new clauses to allow the House to have a proper vote on the deal.

[Dr Johnson]

I will be relatively brief. New clause 15 would require the Secretary of State to lay before Parliament any trade negotiation requiring NHS spending or funding exceeding £100 million, in the form of regulations subject to the affirmative procedure. New clause 76 would require the arrangements between the United States and the United Kingdom on pharmaceutical pricing to be laid before the House to be voted on.

A key concern is costing. There have been various estimates of the additional cost of medicines. The former Secretary of State, the right hon. Member for Ilford North (Wes Streeting), said that he would not change or cut the NHS budget to pay for that increased cost. Will the Minister tell us the estimated extra cost of medicines, and where that money will come from, if not from the DHSC budget?

[Gregory Stafford (Farnham and Bordon) (Con)]

It is a pleasure to serve under your chairship, Ms Lewell. Like the shadow Minister, I will be relatively brief. [Interruption.] It was not clear whether that was a sound of appreciation or disappointment from the Minister. I will assume that she receives everything I say with the same noise and grace.

Yesterday, the Secretary of State appeared before the Health and Social Care Committee—on which my hon. Friend the Member for Isle of Wight East and I sit—and was questioned at some length by the Chair, the hon. Member for Oxford West and Abingdon (Layla Moran), about the UK-US trade deal. It was striking that the Secretary of State appeared unable to answer the basic question of whether an impact assessment could be presented to the Committee—under whatever terms of secrecy or confidentiality the Department wanted to place on it—to allow us to assess the costs, as the hon. Member for Winchester outlined, and, one would hope, the benefits.

The Secretary of State was very clear that there were benefits, but he was unable to outline what they were. He cited commercial confidentiality, which I do understand; there will be commercially confidential elements to the deal. What was really striking, however, was that even though the Select Committee was very happy to receive the information under whatever strictures he wanted to put on it, so that we could scrutinise it, it was not given. That is serious cause for concern.

I understand what the hon. Member for North Shropshire seeks to achieve through new clauses 15 and 76, but there are some problems in their drafting. There will be commercially confidential elements to the deal, so laying it before the House essentially completely unredacted, as new clause 15 would require, might pose real problems. Likewise, I assume that the intention of new clause 76 is to focus specifically on the UK-US trade deal as currently formulated.

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[Dr Chambers]

I appreciate that. Just to reiterate, I am talking specifically about the trade deal with the United States, not about every single trade deal. We completely accept that primary legislation is not necessarily the best way to scrutinise a trade deal, but given the lack of options at the moment, we must use every political mechanism available to create transparency.

[Dr Johnson]

This Government came to power saying that they would be more transparent, but they have not been. It took us months to get numbers out of the Government about the Chagos Islands deal.

[Dr Chambers]

I am grateful to the shadow Minister for that intervention.

Unless something changes significantly by the time we get to vote on new clause 76, which I understand will not be today, we will press it to a vote for transparency’s sake, but we will withdraw new clause 15. I beg to ask leave to withdraw the clause.

Clause, by leave, withdrawn.

New Clause 16

Duty to promote the health and wellbeing of carers

“After section 14Z44 of the NHS Act 2006 insert—

‘Duty to promote the health and wellbeing of carers

(1) Each integrated care board must exercise its functions with a view to improving and maintaining the physical health, mental health, and wellbeing of carers within its area.

(2) In exercising its duties under this section, an integrated care board must have regard to—

(a) reduction of health inequalities experienced by carers,

(b) prevention of deterioration in carers’ physical and/or mental health,

(c) involvement of carers in decisions relating to the care of persons for whom they provide care, and

(d) the need to ensure carers are able to access appropriate preventative and other health services and support.

(3) An integrated care board must take reasonable steps to ensure that NHS bodies and providers of NHS services within its area—

(a) consider the health and wellbeing needs of carers in care planning and discharge processes,

(b) involve carers appropriately in decisions relating to care and treatment, and

(c) provide carers with information about support available to them for their health and wellbeing.

(4) In preparing a Joint Forward Plan, an integrated care board must include—

(a) an assessment of the health and wellbeing needs of carers within its area,

(b) steps the integrated care board proposes to take to improve outcomes for carers, and

(c) measures for reducing inequalities experienced by carers.

(5) In this section, “carer” has the meaning given by section 10 of the Care Act 2014 and includes a young carer within the meaning of section 96 of the Children and Families Act 2014.’”—(Dr Chambers.)

This new clause would introduce a duty for integrated care boards to promote the health and wellbeing of carers.

Brought up, and read the First time.

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[Dr Johnson]

This group of new clauses is about carers and how we look after them. They do so much work for so many people across the country by looking after their loved ones. Many of them are not necessarily in good health themselves, and some are even children. These new clauses have a positive intention: to try to improve carers’ lives and make sure that they are recognised.

I congratulate the hon. Member for Winchester on his success in keeping open his respite care centre. Perhaps he could share his notes with me, because the Reform county council in Lincolnshire is currently trying to close Swallow Lodge, a respite care centre that provides for people of working age who have severe disabilities. The council wants to close it, and the people there are devastated by that suggestion. We had a public meeting, which many people came to, and they had not been consulted at that point. I think that an assumption was made that they are not able to communicate, but many of them are able to do so with support. However, that communication had not happened.

It has caused fear for people. They are worried about where they will go instead and whether it will be suitable. What about the people they made friendships with at the centre? Many of them have elderly parents—in their 80s, in some cases. It is also economically short-sighted, because people may end up going into full-time care, which will ultimately cost the council more.

The council has now been persuaded to do a full consultation, which will happen over the next few months. If the hon. Member can share anything with me that was successful for him that could help me keep Swallow Lodge open against the Reform county council’s changes, I would be very grateful.

[Sojan Joseph]

As the chair of the APPG on adult social care, I pay tribute to unpaid carers for the enormous contribution they make to their families, their communities and wider society. I often have meetings with them, and as part of my job before I became an MP—I worked in the NHS—I had a lot of contact with carers. I have seen so many vulnerable patients benefit from the enormous amount of work that carers do. In some services, such as the mental health service, there is already provision for identifying carers, carers’ assessments and support for carers. Carers provide extraordinary support, often at great personal sacrifice.

Although the intention here is to make the wellbeing of carers a statutory duty, we need to be careful that we do not put any statutory responsibility for that on the NHS and create more administrative burden for it. I would appreciate it if the Minister would respond to that point, and if the Government would consider something to support carers, while not putting any more administrative burden on the NHS, where we are focusing on providing more support on the frontline.

New clauses 16 and 17 would impose new obligations on integrated care boards to promote carers’ wellbeing and to identify and record unpaid carers whenever they come into contact with NHS services. I want to make it clear that we should not create any more administrative burdens for NHS frontline services. Although identifying and supporting carers is important, the requirement would add to the administrative burden on NHS organisations at a time when they should be focusing on delivering frontline care.

We should be cautious about creating new statutory duties that divert resources and staff time away from patients. The proposal for a national respite care scheme is similarly well intentioned, but it risks imposing a centralised, one-size-fits-all model across a system that already makes local authorities and health boards responsible for assessing local needs and delivering support. Again, although we need more support for carers, we should be careful that we are not duplicating any of the services that are already available. Some charities also do a brilliant job of supporting carers. The provisions in these new clauses should be looked into, but we need to be cautious that we do not create more burdens for our existing systems.

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[Karin Smyth]

Like the hon. Member for Isle of Wight East, I am grateful to the hon. Member for Winchester for bringing this discussion to the Committee. All Members are committed to ensuring that carers receive the care and support they need. The Government recognise that unpaid carers play a vital role in sustaining the health and wellbeing of millions of people across our country. I pay tribute to them, and recognise all the work they have contributed to. I also note the work done by my hon. Friend the Member for Ashford on the APPG with Members from across the House.

The hon. Member for Winchester highlighted the shocking impact on the physical and mental health of people who are caring, which we heard about in the evidence session. That is an important issue, and it is good that we can now talk more about the mental health of carers. As he rightly said, many of us are carers. It is not an easy thing to do.

I pay tribute to the hon. Member for Isle of Wight East for his comments about the importance of wraparound care to people who do not want to leave the one they care for. I recognise that respite care is important.

I wish the hon. Member for Sleaford and North Hykeham good luck in her campaign in her constituency with the Reform council.

[Dr Johnson]

I thank the Minister for her good wishes. The council has not just proposed closing Swallow Lodge; it has also recently closed the memory support service. I listened to what my hon. Friend the Member for Isle of Wight East said about services for people with dementia, and this is another area where people will suffer because of the closure of vital services.

[Karin Smyth]

When the hon. Lady gets back to her constituency, I am sure she will be campaigning heavily on behalf of her constituents.

We acknowledge the need to support carers’ health and wellbeing, but we do not think new clause 16 is necessary, because the existing legal framework already requires the system to support them. The new clause duplicates existing duties and risks adding complexity, rather than improving support in practice. Carers are explicitly referenced in the NHS constitution, which establishes the principles and values of the NHS in England and sets out the aim of improving the health and wellbeing of the population. The Secretary of State for Health, all NHS bodies, private and voluntary sector providers supplying NHS services, and local authorities in the exercise of their public health functions are required by law to take account of the constitution in their decisions and actions. Local authorities and NHS bodies also have a duty of co-operation in respect of their functions relating to carers.

Finally, under the Bill, the Secretary of State will take on NHS England’s role in promoting the involvement of each patient in decisions relating to their illness, care or treatment. That duty includes the involvement of carers and representatives.

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[Dr Johnson]

I beg to move, That the clause be read a Second time.

[The Chair]

With this it will be convenient to discuss the following:

New clause 62—Family support duty following serious childhood diagnosis—

“(1) Where a child is diagnosed with cancer or another life-threatening condition, the responsible NHS provider must, within 14 days of diagnosis, ensure that the child’s family is offered appropriate information, support and coordination services.

(2) For the purposes of subsection (1), the responsible NHS provider must offer—

(a) access to a named family support coordinator;

(b) information regarding welfare benefits, financial support and relevant public services;

(c) information regarding employment rights and workplace support available to parents and carers;

(d) signposting to appropriate mental health and psychological support services;

(e) information regarding relevant local and national charities, support organisations and peer-support services;

(f) a written Family Support Plan setting out the support available to the family during treatment; and

(g) notification and information sharing in accordance with subsection (3).

(3) The responsible NHS provider must provide the child’s registered general practitioner and where different, the registered general practitioners of the child’s parents or primary carers, with a Family Support Summary.

(4) A Family Support Summary must include—

(a) the child’s diagnosis;

(b) the proposed treatment plan;

(c) the expected duration and intensity of treatment, where known;

(d) information regarding the potential impact of the diagnosis and treatment on parents, carers and siblings; and

(e) any recommendations regarding wellbeing support, monitoring or referral for the family unit.

(5) Following receipt of a Family Support Summary, the relevant general practice shall be encouraged to consider the wellbeing needs of parents, carers and siblings and, where appropriate, provide information, assessment, referral or signposting to suitable support services.

(6) NHS England must publish guidance for NHS providers on the discharge of duties under this section.

(7) In this section—

‘child’ means a person under the age of 16;

‘family’ includes parents, guardians, primary carers and siblings;

‘life-threatening condition’ means a condition designated as such by the Secretary of State in guidance.”

This new clause places a duty on NHS providers to offer practical information, coordination and support to families within 14 days of a child being diagnosed with cancer or another life-threatening condition.

New clause 63—Parent mental health and bereavement support duty—

“(1) Where a child is diagnosed with a life-threatening condition, the responsible NHS provider must ensure that the psychological wellbeing of parents, guardians, primary carers and siblings is considered as part of the child’s care pathway.

(2) Within 14 days of diagnosis, the responsible NHS provider must offer—

(a) a parental psychological wellbeing assessment;

(b) access to a designated family support practitioner, psychologist, counsellor or other appropriately qualified professional;

(c) information regarding the psychological impact of serious childhood illness, including trauma, anxiety, depression, stress and bereavement;

(d) a written Family Mental Health Support Plan;

(e) notification to the child’s registered general practitioner and, where different, the registered general practitioners of parents or primary carers.

(3) During active treatment, the responsible NHS provider must ensure that parents and primary carers are offered periodic psychological wellbeing reviews.

(4) The responsible NHS provider must offer an additional psychological wellbeing review following any—

(a) significant deterioration in the child’s condition,

(b) relapse,

(c) progression of disease,

(d) transition to palliative care, or

(e) other material change in prognosis.

(5) The responsible NHS provider must ensure that support under this section is offered proactively and must not be dependent upon a parent, guardian, carer or sibling requesting support, identifying their own need, or making a self-referral.

(6) Following the death of a child, the responsible NHS provider must—

(a) offer a bereavement wellbeing assessment to parents or primary carers;

(b) offer access to bereavement counselling, psychological support or equivalent specialist services;

(c) make proactive contact with the family within 14 days of the child’s death;

(d) offer further follow-up support at intervals specified in guidance issued by NHS England;

(e) ensure that referral pathways are available where significant psychological distress, trauma, anxiety, depression or post-traumatic stress symptoms are identified.

(7) The responsible NHS provider must ensure that information regarding available support services is provided to siblings and that age-appropriate emotional support pathways are available where required.

(8) NHS England must publish guidance regarding—

(a) parental psychological wellbeing assessments;

(b) family mental health support following serious childhood diagnosis;

(c) bereavement support following the death of a child;

(d) support for siblings affected by serious childhood illness;

(e) referral pathways into specialist mental health services;

(f) minimum standards for proactive family mental health support.

(9) NHS England must publish and lay before Parliament an annual report on compliance with this section.

(10) In this section—

‘child’ means a person under the age of 16;

‘family’ includes parents, guardians, primary carers and siblings;

‘life-threatening condition’ means a condition designated by the Secretary of State in regulations.

(11) The Secretary of State must, within three years of the commencement of this section, undertake a review of its operation and lay a report before Parliament.”

This new clause would establish a statutory duty on NHS providers to identify and support the psychological wellbeing of parents, carers and siblings following the diagnosis of a life threatening childhood condition. It would create a proactive, opt-out family mental health pathway from diagnosis through treatment and, where applicable, bereavement.

New clause 64—Review of uncertain imaging findings in high-risk childhood illness—

“(1) Where imaging undertaken in relation to a child with a high-risk cancer or other life threatening condition identifies findings that are—

(a) inconclusive,

(b) indeterminate, or

(c) suspicious,

the responsible NHS provider must ensure that the findings are reviewed by a consultant clinician responsible for the child's care.

(2) Following such review, the responsible NHS provider must ensure that the child’s parent, guardian or primary carer is informed—

(a) of the nature of the uncertainty identified;

(b) whether disease progression, relapse or recurrence can be confidently excluded;

(c) what further investigations or surveillance are being considered; and

(d) the risks and benefits associated with immediate further imaging, alternative imaging modalities, or continued observation.

(3) Where disease progression or relapse cannot be confidently excluded, the responsible NHS provider must consider whether additional imaging or investigation should be undertaken within 14 days or as soon as clinically practicable, whichever is sooner.

(4) The outcome of any discussion held under subsection (2), including the views expressed by the child's parent, guardian or primary carer, must be recorded in the child's medical records.

(5) NHS England must publish guidance on the operation of this section, including circumstances in which further imaging should be considered following uncertain or indeterminate findings.”

This new clause requires consultant review of uncertain imaging findings in children with designated high-risk conditions. The amendment also aims to ensure that parents are informed of the uncertainty, the available options and the risks and benefits of those options before a decision is made.

[Dr Johnson]

The hon. Member for Dewsbury and Batley (Iqbal Mohamed), who tabled new clause 25, asked me to speak to it, which I shall do briefly. This is a very serious issue. Critically ill children are infants, children and adolescents with life-threatening illness or injury, often requiring intensive, continuous care to survive conditions from leukaemia to meningococcal disease, traumatic brain injuries and major surgery such as spinal surgery. I should say that I am a consultant paediatrician, but I have worked in paediatric intensive care as a junior—now called a resident—doctor.

The new clause as drafted does not, I think, do what the hon. Member was aiming for. When I read it through, I think he is looking at cases such as the tragic one of little Charlie Gard, whom we all remember died of encephalomyopathic mitochondrial DNA depletion syndrome, known as MDDS. It is incredibly rare. That tragic case highlighted the potential for disputes between parents and doctors, which, thankfully, are unusual.

The new clause is headed, “Parents of critically ill children: communication and involvement in decision-making”. Of course parents should be involved in decision making about their children, but it is worth noting that the median time that children spend in ICU is two days and that, thankfully, most of them get better—very few do not. The new clause talks about teachers being involved, which in most cases is unnecessary and impractical; in many cases, a child may be admitted on a Friday and discharged from the ICU by the Monday. In the majority of cases, there is no practical reason for teachers to be involved.

I understand the desire for parents to be part of every meeting, but sometimes clinicians need to be able to talk frankly about cases. Sometimes they will have multidisciplinary meetings where they talk about a plethora of different cases, or they may compare one case with another in terms of what they have seen, the findings of scans and the like, so it is not possible to have parents in every single meeting, although it is of course desirable for them to be aware of the discussions.

Other parts of the new clause, including provision for parents to know about everything and to set out how communication and language needs may be met, seem reasonable. It mentions independent mediation where there is disagreement, which is a beneficial way to go about things, but we must not legislate so as to get in the way of urgent care, because most critically ill children in intensive care have urgent care needs that need dealing with now, not in a week’s time. Forming ethics committees to make decisions takes a long time, and that would get in the way of urgent care.

I think the hon. Member for Dewsbury and Batley is aiming for legislation that relates to chronically mechanically ventilated children with significant medical conditions, rather than children with an acute critical illness, but I said I would move the new clause and I have. I think he is trying to provide better care for some of the sickest children. That is a desirable aim and I know he cares deeply about it, but the new clause as drafted would not do what I think he aims for, and it could get in the way of paediatricians and others managing some of the sickest children in the country, so I will not press it to a vote.

[Karin Smyth]

I am grateful to the hon. Member for Dewsbury and Batley for tabling new clause 25, and grateful to the hon. Member for Sleaford and North Hykeham for her comments on it. It is a genuine pleasure to hear the expertise of clinicians such as her who work in the field of children’s health. She is obviously very passionate about that, and I thank her for bringing her expertise and commitment to looking after children, including critically ill children, to the Committee.

I recognise the profound impact that receiving a diagnosis of a life-threatening condition has on a child and their wider family. At such an overwhelming time in their lives, it is vital that families feel supported, informed and able to navigate the care and services available to them. We recognise that families can face huge variation in the support available and that they have to navigate complex systems at a particularly difficult time. I know that many hon. Members support many families in such circumstances in their constituencies. The Government are committed to ensuring that families have access to the support they need in the most straightforward way possible.

New clause 25 seeks to place a duty on the Secretary of State to issue guidance to integrated care boards on communications with parents of critically ill children and on parents’ involvement in decision making in respect of the treatment or care of their child. We heard from the Opposition spokesperson about some of the operational issues with some of its provisions, but there are no issues with its intent: of course parents should be involved and have good decision making at such a time.

Decisions about the care of a critically ill child can of course be distressing. We need to ensure that we get the process right from the beginning. That starts with good communication, sensitive handling and ensuring best practice across the system. Healthcare professionals should always act in the best interests of their patients; the views of parents are of course very important, but the child’s best interests are paramount, and we should not do anything that undermines that crucial principle. It is important that families and medical professionals communicate and, where possible, reach agreement on the care and treatment that is in the best interests of the child.

To support that, there are already many excellent examples of guidance and best practice across the health system. The Royal College of Paediatrics and Child Health is currently updating its framework for clinical practice on navigating decisions to provide, limit or withdraw treatment towards the end of a child’s life. That framework will include communication principles, legal and ethical principles, and clinical and practical considerations, including the role of clinical ethics services. It will also include guidance on navigating disagreements for professionals, children, young people and their families. An e-learning platform is available to staff working at all levels in children’s healthcare. The training programme provides professionals with a suite of resources to enhance knowledge, skills and confidence. It supports healthcare providers to recognise, manage and de-escalate conflict between families and healthcare providers where it occurs, and to signpost to both professional resources and resources for families. The actions I have outlined will continue to help and support the existing best practice.

[Dr Johnson]

The Minister is setting out the important guidance that can be provided to clinicians managing the care of children who are seriously unwell. I want to add for the record that I am a member of the Royal College of Paediatrics and Child Health, which is producing that guidance; I am grateful to her for setting out its importance. End-of-life-care decisions are very difficult. They need to be taken in conjunction with families but—the Minister is absolutely right—they must be made in the best interests of the child in all cases.

[Karin Smyth]

I am sure that the college will make best use of the hon. Member’s clinical expertise and her expertise as a legislator to get that guidance right. We work with royal colleges to ensure that we get the best clinical evidence into guidelines. I hope the actions I have outlined will continue to help and support the existing best practice, training and guidance on shared decision making and dispute resolution, so that it is embedded across the system.

There are a number of other important measures in this group that have not been mentioned. Let me just say that, alongside some of the things I have outlined, we want to progress system-wide reforms to improve the way children and young people, and their families, are supported across many conditions. We are working to bring forward a modern service framework for children and young people that will set out how we will improve quality for children and young people’s services in the longer term, as part of our 10-year health plan.

[Dr Johnson]

I beg to ask leave to withdraw the motion.

Clause, by leave, withdrawn.

New Clause 28

Appeals against health and social care provision in EHC plans

“(1) The Special Educational Needs and Disability Regulations 2014 (S.I. 2014/1530) are amended in accordance with subsections (2) and (3).

(2) After regulation 42, insert—

‘42A Other matters relating to EHC plans against which appeals may be brought

(1) In addition to the matters set out in section 51(2) of the Act, a child’s parent or a young person may appeal to the First-tier Tribunal against the matters set out in paragraph (2), subject to section 55 of the Act (mediation).

The matters are—

(a) a decision of a local authority, following an EHC needs assessment, that it is not necessary for health care provision or social care provision to be made for the child or young person in accordance with an EHC plan;

(b) where an EHC plan is maintained for the child or young person—

(i) the child’s or young person’s health care or social care needs as specified in the plan;

(ii) the health care provision or social care provision specified in the plan.’

(3) In regulation 43 (appeals), after paragraph (2) insert—

‘(3) When determining an appeal on the matters set out in regulation 42A(2)(a), the First-tier Tribunal has the power to order that—

(a) health care needs, or health care needs of a particular kind, which relate to the child or young person's special educational needs are specified in the EHC plan in accordance with regulation 12(1)(c);

(b) social care needs, or social care needs of a particular kind, which relate to the child or young person's special educational needs or to a disability are specified in the EHC plan in accordance with regulation 12(1)(d).

(4) When determining an appeal on the matters set out in regulation 42A(2)(b), the First-tier Tribunal has the power to order that—

(a) the health care needs specified in the EHC plan in accordance with regulation 12(1)(c) are amended;

(b) the social care needs specified in the EHC plan in accordance with regulation 12(1)(d) are amended;

(c) health care needs, or health care needs of a particular kind, which relate to the child or young person's special educational needs are specified in the EHC plan in accordance with regulation 12(1)(c) where those needs have not been specified in the plan; and

(d) social care needs, or social care needs of a particular kind, which relate to the child or young person's special educational needs or to a disability are specified in the EHC plan in accordance with regulation 12(1)(d) where those needs have not been specified in the plan.

(5) When determining an appeal on the matters set out in regulation 42A(2)(a), the First-tier Tribunal has the power to order that—

(a) health care provision, or health care provision of a particular kind, is specified in the EHC plan in accordance with regulation 12(1)(g);

(b) social care provision, or social care provision of a particular kind, is specified in the EHC plan in accordance with regulation 12(1)(h).

(6) When determining an appeal on the matters set out in regulation 42A(2)(b), the First-tier Tribunal has the power to order that—

(a) the health care provision specified in the EHC plan in accordance with regulation 12(1)(g) is amended;

(b) the social care provision specified in the EHC plan in accordance with regulation 12(1)(h) is amended;

(c) health care provision, or health care provision of a particular kind, is specified in the EHC plan in accordance with regulation 12(1)(g) where that provision has not been specified in the EHC plan; and

(d) social care provision, or social care provision of a particular kind, is specified in the EHC plan in accordance with regulation 12(1)(h) where that provision has not been specified in the EHC plan.

(7) When the First-tier Tribunal makes an order in respect of health care needs or health care provision, it must send a copy of the order to the responsible commissioning body.

(8) When sending a copy of an order, the First-tier Tribunal may also send a copy of the decision which disposes of any appeal brought under section 51(1) of the Act or under regulation 42A to the responsible commissioning body.

(9) The responsible commissioning body must respond within 5 weeks beginning with the date of the order to—

(a) the child's parent or the young person, and

(b) the local authority that maintains the EHC plan.

(10) The time limit specified in paragraph (9) does not apply where the First-tier Tribunal directs that a different time limit is to apply for the responsible commissioning body's response.

(11) A response under paragraph (9) must—

(a) be in writing,

(b) state what steps, if any, the responsible commissioning body has decided to take following its consideration of the order, and

(c) give reasons for any decision not to follow the order, or any part of it.

(12) The local authority must send a copy of the response received from the responsible commissioning body under paragraph (9)(b) to the Secretary of State within 1 week beginning with the date it was received.

(13) When the First-tier Tribunal makes an order in respect of social care needs or social care provision, the local authority must issue the amended EHC plan to the child's parent or the young person within 5 weeks beginning with the date of the order.

(14) The time limit specified in paragraph (13) does not apply where the First-tier Tribunal directs that a different time limit is to apply.

(15) The local authority must send a copy of the amended EHC plan under paragraph (13) to the Secretary of State within 1 week beginning with the date on which this is issued to the child's parent or the young person.’

(4) The Special Educational Needs and Disability (First-tier Tribunal Recommendations Power) Regulations 2017 (S.I. 2017/1306) are revoked.

(5) In consequence of the revocation made by subsection (3), the following 15 provisions of the Special Educational Needs and Disability Regulations 2014 are also revoked—

(a) regulation 10(3)(e);

(b) regulation 14(2)(e);

(c) regulation 201(11)(e);

(d) regulation 21(10)(e);

(e) regulation 22(5)(e);

(f) regulation 25(2)(e); and

(g) regulation 31(3)(e).”—(Dr Chambers.)

This new clause extends the powers of the First-tier Tribunal so that when it is determining an appeal it may order that Education, Health and Care plans must include health and social care needs and provision, rather than just making recommendations on these matters.

Brought up, and read the First time.

[Dr Chambers]

I beg to move, That the clause be read a Second time.

New clause 28, tabled in the name of the Chair of the Health and Social Care Committee, my hon. Friend the Member for Oxford West and Abingdon, extends the powers of the first-tier tribunal so that, when it determines an appeal, it may order that education, health and care plans must include health and social care needs and provision, rather than just making recommendations on those matters.

I am sure all Members are probably in a similar situation in that EHCPs, in their various forms, are one of the main reasons we get contacted by constituents; they certainly fill up my inbox. Following the Education Committee’s report, “Solving the SEND Crisis”, which identified significant gaps in accountability and engagement from the DHSC and health services in the special educational needs and disabilities—or SEND—system, the Health and Social Care Committee held a one-off evidence session to build on those findings, looking at the delivery of the health aspects of EHCPs.

The Health and Social Care Committee followed up a recommendation that the Education Committee had made that the powers of the SEND tribunal service should be extended to allow it to issue binding recommendations to health services, not just education providers. SEND tribunals are independent national tribunals that decide appeals against local authority decisions about the special educational needs of children and young people, including decisions made about an EHCP. Currently, they can make binding recommendations in relation to education provision, but not in relation to health and social care needs.

The Education Committee argued:

“This would ensure that when a failure to deliver a health provision specified in an EHC plan occurs, health bodies are legally obligated to take corrective action.”

When the Health and Social Care Committee raised that with witnesses in its evidence session, several were supportive of placing this duty in legislation, although they noted that it would require other reforms to workforce and commissioning arrangements to be successful. New clause 28 would provide a level playing field between education bodies and ICBs, so that ICBs are also under a legal obligation to comply with recommendations from SEND tribunals.

[Dr Johnson]

I should say that I am a member of the Education Committee. As the hon. Member for Winchester says, new clause 28 would extend the powers of the first-tier tribunal so that, when determining an appeal, it may order that EHCPs must include health and social care needs and provision, rather than just making recommendations on those matters.

It is clearly important that children with special educational needs get the support they need. We are all very aware, from our inboxes, that that does not always happen. I do not know whether putting this into legislation would make it happen, or whether it would need much more work than one clause, but clearly it is a very important aim and I support the principle of it. I would be grateful for the Minister’s comments on how she thinks this could work in practice and whether it is legislation or a more widespread plan that is required.

[Gregory Stafford]

I rise briefly to speak on this as well. I should note for the record that I am the vice-chair of the all-party parliamentary group on special educational needs and disabilities.

The hon. Member for Winchester, on behalf of the hon. Member for Oxford West and Abingdon, made the case very strongly. I am a member of the Health and Social Care Committee, and we took evidence as he described. The lack of a statutory obligation in the current EHCP process is a fundamental problem. We need to ensure that the health elements are put on the same footing as the social care ones. As I am sure is the case in every hon. and right. hon Member’s constituency inbox, the number of children who are receiving or require support with special educational needs and disabilities, and the frustrations with the process both locally and nationally, are rightly something that we, as parliamentarians and policymakers, need to get a grip on.