Universities

Lord Patel Excerpts

Thursday 14th November 2024 Lords Chamber

[Lord Patel (CB)]

My Lords, I declare an interest as a professor emeritus of the University of Dundee and its previous chancellor. I have also been associated with the University of St Andrews.

I applaud the Government for recognising that a more sustainable approach to the funding of higher education and research is needed. I am pleased to see that the Government have protected the R&D budget and full funding of our association to Horizon Europe. As highlighted by the Universities UK report, brilliantly introduced by the noble Baroness, Lady Warwick, I hope that, going forward, the Government will recognise that more will be needed to ease financial pressures on universities to support emerging blue-skies research and develop infrastructure to do so.

I will briefly mention two areas that deserve further attention—one was briefly mentioned by the noble Lord, Lord Krebs. The bedrock of the UK ambition to remain a leader in science and technology is doctoral education in UK universities. But there are worrying signs. Although talented overseas doctoral students flock to UK universities, which are second only to the USA, domestic demand, particularly from talented students, is falling. This and the reduction in funded PhD studentships are likely the next university crisis.

Of the 113,000 PhD research students, 46,300 are from overseas. A recent report suggesting that there would be fewer funded places in the future is worrying. Engineering and Physical Sciences Research Council training centres will fall from 75 to 40, leading to some 1,750 fewer funded places. The Arts and Humanities Research Council is reducing its numbers of funded PhD students from 475 to 300. The Wellcome Trust, once a major funder of doctoral students, particularly in the life sciences, is to severely reduce its support following its new strategy. Universities currently provide some PhD studentships and considerable other support for doctoral education, but this will be an early casualty if universities face further financial pressures.

Doctoral researchers are a big cost centre, with low cost recovery. Universities have subsidised doctoral research from fees from overseas students, as we have heard, and from other sources, such as the QR funding. In the past, universities have done this training on the cheap, thanks to 30 years of university growth. By the way, talented overseas PhD students are keen to come to the UK and stay, innovate and help grow our economy, as was mentioned. But, for this to happen, the Government need to introduce more stability in student and post-doc migration policy, as was alluded to. We need them to be able to stay and grow our economy, like in other countries. Otherwise, it does not make sense for the UK to grow brains only for other countries to benefit.

My second point is also relevant to universities’ ability to support research. An important part of this is the QR funding, mentioned in some detail by the noble Lord, Lord Krebs, so I will not go over it again. Although there has been a welcome increase in charities funding research, charity research support funding—CRSF—has not seen a commensurate increase or an increase with inflation. The cost recovery of funding related to charity-funded research is now less than 57%. If this continues, it would undermine the important partnership for research between government, charities and universities.

On successful research institutes, I disagree with the noble Lord, Lord Krebs, who said that, for institutes, the return is two to one, as opposed to three to one for universities. I might have said that it is four to one for institutes, such as the Institute of Cancer Research. This not only carries out fundamental research, particularly in cancers, but has been responsible for producing 60 drug molecules, two of which have been on the market for treating breast cancer and prostate cancer. It also trains half the number of UK oncologists. But it benefits from this research support only due to the funding it gets through the CRSF-related funding, which is not enough for it to support its doctoral students. Over the years, it has therefore supported this activity to the tune of £30 million, which it has to raise from other sources.

There is a need to look at the level of QR and CRSF funding with some urgency. With the spending review in mind, there is a need to look at a more sustained model of university research funding. I hope the Government will be sympathetic.

King’s Speech

Lord Patel Excerpts

Friday 19th July 2024 Lords Chamber

[Lord Patel (CB)]

My Lords, I join other noble Lords in welcoming the noble Baroness, Lady Smith of Malvern, and congratulate her on her maiden speech. I tease her a little when I say that it was a really apolitical maiden speech. I also extend my congratulations to the noble Baroness, Lady Merron, on her appointment as Minister of State in the Department of Health and Social Care. I wish her well. I have no doubt that in days to come we will have many opportunities to interact and debate health issues.

In the brief time allocated to me today, I will confine my remarks mostly to issues related to health. I find myself much in support of the proposed areas of legislation that relate to health. The Tobacco and Vapes Bill, with powers to implement it, will deliver huge health gains. More than 80,000 people a year die of diseases related to smoking, from 18 different types of cancers to cardiovascular disease, chronic lung disease, pregnancy-related disease, stillbirths and pre-term births. The measures will go a long way to reducing health inequalities. Figures show that there are more than 6 million smokers in the UK today, and more than 100,000 children take up smoking each year. The Government’s aim over the years to make the UK a smoke-free country is ambitious but, in my view, worthy.

The proposals to ban the advertising and promotion of vapes are good as far as they go. We will have to wait for details in the legislation. I hope the Government will be bold enough in time to ban vapes altogether. Scientific evidence already shows their high levels of nicotine, and children are taking up vaping; 5% of children now use vapes and 20% have tried vapes. Vapes should be banned as much as tobacco smoking.

At long last, we will now have a Bill to amend mental health. No doubt the noble Baroness, Lady Hollins, will have much to say about that. For my part I welcome it. I hope that the legislation will have robust measures to protect and help particularly children and people with learning disabilities. Importantly, I hope that the legislation will include measures to monitor the impact of the proposed legislation, possibly through the appointment of a commissioner, without us having to amend the Bill. I also hope that the legislation will address funding issues in mental health.

The Government’s wish to deliver healthcare closer to home is one that I hope they will pursue with determination, but it cannot be done without the reform of primary and community care, including a greater share of funding going to primary care and community care. This, with legislation related to the devolution of powers more locally, has to be the way forward for providing more care closer to home. We can learn much from countries such as Denmark, where locally managed primary and community health centres deliver much of the healthcare, with 99% patient satisfaction. There will be much opposition from vested interests to develop such a model. I hope the Government will be bold.

I welcome the Government’s commitment in the proposed digital and smart data Bill to allow use of data for medical research. As I have mentioned previously, the lack of legislation to allow the use of health data for scientific research has hindered us in improving the delivery of healthcare, driving innovations, conducting clinical trials, developing new treatments and much more. I hope that the Bill will remedy this.

While all that I have mentioned is positive, we do not yet have plans for the provision of social care or, apart from a promise of more GPs and midwives, a health workforce plan—particularly for the nursing workforce—for a service that by 2035 is likely to employ nearly 10% of the working-age population. Nor is there yet a sustainable funding formula for a service that may well end up costing more than £250 billion by 2035. The NHS for far too long has been a political football subjected to ideologically driven reforms not in the best interests of patients. What we need is long-term political consensus, and I hope the Government might work towards that. Securing political consensus is important given the amount of public money spent on health and adult social care, and so is accountability. Periodic reviews, commissions, parliamentary inquiries et cetera are not the answer. What we need is an independent body, such as an independent office of health and care sustainability, that will hold the Government to account for their funding, plans and long-term use of money.

Universities: Nuclear Energy Sector Skills

Lord Patel Excerpts

Thursday 7th December 2023 Lords Chamber

[Baroness Barran (Con)]

My noble friend makes a good point. I share her appreciation for the organisations that she named. We are investing £50 million over the next two years to pilot ways in which to increase the number of apprenticeships in engineering and other key growth sectors, as well as to address barriers to entry into these professions. We will set out more detail on that in the new year, which will, I hope, go some way to addressing her concerns.

[Lord Patel (CB)]

My Lords—

[Earl Russell (LD)]

My Lords—

--- Later in debate ---

[Baroness Barran (Con)]

The noble Viscount will have to forgive me; I am not familiar with the details on that, but I would be happy to write to him.

[Lord Patel (CB)]

My Lords, does the Minister agree that, to develop nuclear technology—including fusion technology—we need many more PhD students working in postgraduate degrees, as well as more funding for those PhDs? Furthermore, as we are now not going to join Euratom and we do not have a prototype fusion reactor, what plans do the Government have to rejoin the ITER—International Thermonuclear Experimental Reactor—programme?

[Baroness Barran (Con)]

The noble Lord is right that we need more PhDs, but we need skills at every level. That is where the Government’s strategy is focusing, starting in schools and building through T-levels, then to high-quality advanced levels up to PhD. The Government are very open to exploring international co-operation in this area—less on the research side, but the AUKUS agreement was a sign of that.

Education System

Lord Patel Excerpts

Wednesday 30th November 2022 Lords Chamber

[Baroness Barran (Con)]

I will be able to update the House on the progress of the Schools Bill in due course, but I agree with the right reverend Prelate. The Government are very supportive of the faith sector, the schools within it and their wish to academise in the most constructive way possible.

[Lord Patel (CB)]

My Lords, is the Minister aware of the Law Society report calling for a greater uptake of mathematics teaching to over-16s, only 15% of whom take mathematics? The same applies to science subjects, where there is poor education for over-16s. If this country has ambitions to be a science superpower, the teaching of these subjects to over-16s is important.

[Baroness Barran (Con)]

The Government are aware of the report and are committed to developing all aspects of the STEM subjects. We are doing that particularly in areas where recruitment is difficult, through the provision of significant, £27,000 tax-free bursaries and levelling-up premiums for staff working in those areas.

Social Care: Children

Lord Patel Excerpts

Wednesday 22nd June 2022 Lords Chamber

[Lord Patel (CB)]

My Lords, in the question from the noble Baroness, Lady Walmsley, the Minister suggested that there would be two national children’s identification numbers. Is that correct? Can that be right?

[Baroness Barran (Con)]

I apologise to the House if that is the impression that I gave. I am happy to write to set out the Government’s position in detail.

Higher Education and Research Bill

Lord Patel Excerpts

2nd reading (Hansard): House of Lords
Tuesday 6th December 2016 Lords Chamber

[Lord Patel (CB)]

My Lords, the first reading of the Bill makes me ask the question: what is broken that we are trying to fix? But before I start, I will concur completely with what the noble and learned Lord, Lord Wallace of Tankerness, had to say about the Scottish dimension and the implication of the Bill for it. If he had not said it, I would certainly have done so; if he puts down amendments, I will back them; if he does not, I will put them down myself. I make that quite clear. I see that the noble Viscount, Lord Younger of Leckie, has just left his place, but I was going to say to him that, having the same alma mater as him, the University of St Andrews, I am sure that he understands the need to make sure that the Scottish dimension is addressed.

I have concerns about the autonomy of the universities, the teaching excellence framework, the probationary degree-awarding powers, the Office for Students as a validator of degrees, and, in Part 3, the autonomy of the research councils. I declare my interests: I have been a member of the Medical Research Council for several years, I am the chancellor of the University of Dundee and I am associated with several other educational institutions.

I have a problem with the role of UKRI, Innovate UK and Research England, which have already been mentioned. It is imperative that the Bill does not serve to undermine institutional autonomy, which has been key to the global success of our higher education sector. Universities need to be able to take their own decisions in order to be flexible and responsive to the needs of their students and employers, and to think long term about global challenges. Research has shown that reducing autonomy is linked to lower performance. The ability of every institution to make decisions about the courses it provides—what it chooses to open or what it makes the difficult decision to close—should be made free from government interference. It is therefore very welcome that the Government amended the Bill in the other place to address this concern. However, autonomy is such a fundamental principle of the UK higher education system that the Bill ought to go further.

Central to the potential erosion of autonomy in the Bill is the Government’s approach to standards. Universities UK and others have highlighted that the Bill conflates quality and standards, which we know are two very different things when it comes to higher education. While there may be a legitimate role for the OfS in assessing quality, as defined by the quality code, standards must be the preserve of independent academic institutions. I hope that we will come back to this in Committee—I will certainly table an amendment to explore it.

For students, choosing to go to university represents a significant personal and financial investment. In that context, new providers must demonstrate that they can provide high-quality education. Surely any provider awarding its own degrees or calling itself a university must meet the same high standards. Therefore, it is a particular concern that the Bill allows for the Office for Students to grant probationary degree-awarding powers and test entry into the market. How do you test entry into the market if you do not know what the subsequent quality will be?

I also have concerns about the OfS as a validator. Clause 47 gives the sector’s regulator, the OfS, the ability to validate degrees. This appears to be a clear conflict of interest. It seems wholly inappropriate for a regulator to participate in the market that it regulates. I know of no other regulator that is empowered to act in this way.

With regard to Part 3 of the Bill, I have a greater concern about the autonomy of the research councils. Let us take as an example the Medical Research Council. It is allowed to enter into partnerships, as it does with AstraZeneca to develop drugs and with Marks & Spencer on food security. I also have a problem with how UKRI will relate to councils when those councils have their own research institutes, such as the Medical Research Council Laboratory of Molecular Biology, where several of our Nobel prize winners have come from. If UKRI is the employer, the council must have the relationship with, and must fund, the research workers. We will have to explore that in Committee. It will be important to preserve the autonomy of the research councils.

I have concerns, too, about the Home Secretary’s proposal that different visa rules for “lower-quality” universities and courses will be awarded. What kinds of universities, which have all gone through rigorous quality testing, will be deemed as low quality? Some UK universities ranked most highly in the world may not score particularly highly in the Government’s proposed teaching excellence framework as it currently stands—so will these universities be affected by the new visa regime?

While the policy development is independent of the Bill, any strengthening of the higher education system through this legislation will be undermined if it is coupled with a punitive set of policies when it comes to international students. As other speakers have already asked, how will this affect the recruitment of international students? I think that we will have to explore many of these points in Committee, for which I hope the Government will provide enough time.

Child Exploitation in Oxfordshire

Lord Patel Excerpts

Tuesday 3rd March 2015 Lords Chamber

[Lord Nash]

I am very happy to give the noble Lord that assurance.

[Lord Patel (CB)]

My Lords, we all agree that we have to protect vulnerable children and young people. The UK is a signatory to the Lanzarote convention. Why has it not ratified it in legislation when 38 other countries, including most European countries, have done so and have brought forward legislation?

[Lord Nash]

This is slightly beyond my brief. I will have to write to the noble Lord.

Children and Families Bill

Lord Patel Excerpts

Monday 4th November 2013 Grand Committee

Moved by

[Lord Patel]

128A: Clause 36, page 28, line 33, after “school” insert “, providers of alternative provision,”

[Lord Patel (CB)]

My Lords, it is a pleasure to kick off today’s procedure rather than waiting all day and your turn not coming. It gives me an opportunity to begin and I will try not to be long. Perhaps I may put my amendment in the context of the debate that we have had. First, many times in Committee we have heard that this Bill is all about improving education for all children. I am encouraged by and I thank the noble Lord, Lord Nash, and the Government, for their amendment related to the education of children with cancers and other long-term diseases.

I also thank him for his response to the amendment in the names of my noble friend Lord Kennedy and myself about children with cancers, their education and alternative provision. Putting that into context with this amendment makes this amendment crucial to complete the circle. I say that because my amendment provides a simple insertion to Clause 36. It would ensure that “providers of alternative provision”, including hospital schools and medical pupil referral units, would be able to request an education, health and care—the so-called EHC—needs assessment for pupils who need it. It is necessary because the Bill states that the request for,

“an EHC needs assessment for a child or young person may be made to the authority by the child’s parent, the young person or a person acting on behalf of a school or post-16 institution”.

I believe that what is lacking is that the providers of alternative provision should also be able to request an assessment.

Research carried out by charities such as CLIC Sargent has found that many parents did not think that their child’s educational needs were adequately assessed after their child’s initial diagnosis of their condition, including cancer. That adversely affected the education of the child. Alternative providers are well placed to request and feed into the needs assessment, as they have better knowledge of the child’s needs and have been involved in the child’s education over a period of time. Importantly, the limitations that, for example, the child with cancer still undergoing treatment might have can last several years.

Although some children with cancer go through treatment with minor disruption to their education, some find that they are disadvantaged for years as a result of aggressive and debilitating treatment and have huge gaps in their education. Their needs are very different. Some would be able to return to school with minimal extra provision, while others may require significant additional support. In some cases, that may be during their whole school career to enable them to catch up with their peers and to achieve their potential.

Often, awareness on the part of the school is key, which is not surprising considering that such children and young people are few in number. About 3,500 new cases of child cancers are diagnosed every year and a similar number of other children have other long-term diseases. Because of the variety of conditions, each school will not have the necessary experience. The issue is further exacerbated by the fact the child’s needs will often not be immediately apparent, but learning can still be affected in the longer term as a result of chronic fatigue, attention and concentration difficulties and even psychological and emotional problems. These issues can all directly impact on a child’s ability to learn.

There are, therefore, other benefits in involving hospital school staff and other professionals such as clinical nurse specialists in the process, as they are much more likely to have specialist knowledge about the impact of the child’s cancer and the support required. The amendment has the support of the National Association of Hospital and Home Teaching, a professional association for teachers and staff in the UK who work with children and young people whose medical needs prevent them from attending school.

The Minister has been very considerate in the amendments we debated before, but this amendment is the one missing notch that will help the education of children not just with cancers but with other long-term diseases. It would recognise the important role of alternative providers of education, working in a co-operative way with schools, parents and local authorities. Furthermore, including them in the EHC planning of these children values them as teachers. I hope the noble Lord, Lord Nash, will be sympathetic to the amendment. I am not seeking for this to be in the Bill—although I do not see why not—but I would be content if the guidance could be strengthened. I beg to move.

[Baroness Jones of Whitchurch (Lab)]

My Lords, I wish to speak to Amendments 129, 131, 133, 136, 139, 140, 141 and 142 standing in my name. These amendments focus on the mechanics of the process for determining education, health and care needs, the rights of appeal and the support for families which need to be factored in during the assessment process.

First, Amendment 131 specifies that, when making a decision as to whether special educational provision should be made for a child or young person, the local authority should have,

“regard to the competencies and needs of the child or young person’s parents and immediate family”.

This whole-family approach is an essential feature of the Bill. It should place the child’s or young person’s family at the heart of the assessment process. This is important in informing the provision to be specified in an EHC plan and would provide a much more rounded and personalised programme of support. This is consistent with our approach to previous parts of the Bill which sought to involve families more in the process. I know, from discussions we have had about young carers, that the Minister is sympathetic to this approach.

It is important that family life and home life are considered as part of a support package. Families are key to the well-being of children and young people with special educational needs and disabilities and to ensuring that they have every help to achieve their potential. The draft code of practice is very light on the scope to include families in assessments. The emphasis is on parental involvement in discussions and decisions, which is fine, but we are making a different point: families do not just need to be consulted; their own needs for help and support also need to be assessed. This whole-family approach is a fundamental principle which should thread through the clauses and be spelled out in the Bill. I hope noble Lords will support this amendment.

Amendments 129, 140, 141 and 142 deal with timescales in decision-making. Clause 36 specifies that parents, young people or educational establishments can request an EHC assessment. Our amendments would add a six-week time limit for responding to such requests. We feel that this is a reasonable timeframe, given that such requests would not be made unless there was a view that a child’s education was suffering in some way, so early intervention and action for the sake of the child are obviously important at that point.

We are aware that this requirement is included in the draft code of practice, but we feel that these rights are so fundamental that they should be spelt out clearly in the Bill. We feel that clear timescales would give added reassurance to parents and children alike, and would ensure that local authorities had clear and responsive processes in place to comply with the Act from its commencement, which would make these timescales a reality.

Amendments 133 and 136 deal with the right of appeal. As it stands, Clause 36(5) states that where a decision is taken by a local authority that no special education provision will be made, the local authority must notify the child’s parent or the young person of the reasons for that decision. So far so good, but our amendment would go one step further and ensure that parents are informed of their right to take the decision to appeal as a matter of course. This matter is covered in the code of practice, but we feel that it is better placed as an absolute right in the Bill.

We would go one stage further and argue that all appeal rights should be brought together as one single seamless set of rights spelt out in the Bill. We have separate amendments in a later group that address that point. We believe that a robust appeals process will ultimately be a guarantor of quality and will help to make the EHC system a success. I hope noble Lords will listen carefully to the points that I have made and will feel able to support the amendments.

--- Later in debate ---

[Lord Nash]

My Lords, I am grateful to the noble Baroness for making this point, and we will go away and think about what she has said.

[Lord Patel]

My Lords, I thank the noble Lord for his comments on my amendment. I did not think that the earlier provisions he referred to made it clear that alternative providers of education could initiate an EHC plan, but if his reassurances confirm that, then I am content. I will, however, read exactly what he said and look at the clauses again. I felt the earlier clauses did not clarify that, which is why I tabled the amendment.

Amendment 128A withdrawn.

Children and Families Bill

Lord Patel Excerpts

Wednesday 23rd October 2013 Grand Committee

[Baroness Howarth of Breckland]

My Lords, I will be brief—I am sure that the Minister will be grateful for that—but I want to say two things at the beginning. First, the Minister needs to know that many organisations think that a great deal in the Bill is extremely welcome. The tone of the debate seems critical. I think that we have the number of amendments that we have simply because people care about the issue and have discussed it at length. I have met several organisations which have said how valuable a great deal of what is in the Bill is taking forward work with disabled children. I thought that we needed to have that on record while we are all complaining bitterly about the things that the Government have not done.

I shall speak to Amendment 220. Most of the points have been made, and I will not make a long, heartfelt tirade about the group that I care about. I just say that I work closely with children with congenital heart disease, children born with half a heart, many of them with hypoplastic left heart syndrome. They usually look like perfectly ordinary children but they are in serious difficulty when they get to school. I am therefore immensely grateful to see the Minister’s amendment but I ask that we see the regulations, because the devil will be in the detail as to whether it really meets the requirements. If we can see the regulations early, it might relieve the pain on Report, when people will otherwise want to speak at length again.

My other question is: once we have the regulation and the detail, how will families be able to complain without taking themselves through massive tribunal cases, as we know has happened? It might be worth the Government looking at how parents raise issues under the regulations when they feel that their needs have not been met, because that would save everybody pain. It is no use saying to ourselves that Ofsted will deal with that, because we know that it visits only every four years. Some children have been right through school and never seen an Ofsted inspection. If we could have some clarity on that, it would certainly speed things up.

[Lord Patel (CB)]

My Lords, I speak in support of Amendment 223, to which my name is attached. I will be brief, because most of what I would have said has already been said well by the noble Lord, Lord Kennedy of Southwark.

I particularly support the emphasis that he put on the need for teachers to have the right training to deal with children with medical conditions. Without that training, it is likely that any guidance issued will be completely defunct. The NHS, local authorities and schools need to work co-operatively to ensure that training is provided and accessible to teachers.

I welcome the government amendment most sincerely. I am glad that the Minister has tabled it at this stage. My only problem is that, without seeing the draft guidance, we have no way to comment on whether its breadth and depth will be adequate to meet the needs of children with medical conditions. I therefore hope that the Minister can make a commitment to bring forward the draft guidance before Report, so that we can improve it—not criticise it, but help to improve it.

I also want to ensure the inclusion of medical conditions not already mentioned—the list is exhaustive— such as diabetes, epilepsy, asthma and allergies, but also cancers. It is often thought that children with cancers have short lives. Some, unfortunately, do, but most childhood cancers are now long-term conditions and should be treated more as chronic diseases, not short-term ones. I hope that the Minister will include dealing with cancers in the guidance.

The guidance must recognise both the social and emotional needs of young people with long-term medical conditions, and the fact that a health condition can impact on a child or young person’s ability to learn. Another important point made by the noble Lord, Lord Kennedy of Southwark, was the need to involve the parents and children to ensure that the school understands their condition and its emergency needs. A child having a hypoglycaemic attack requires immediate treatment. A child having an allergic attack requires immediate treatment. A child with a migraine needs to be treated with compassion, because they may lose their vision and hearing. Putting them in a corner or a quiet room does not solve the problem. Those are some of the things that children with a medical condition suffer on a daily basis in schools. If we cannot get things right for children in the Bill, we fail them.

[Baroness Brinton (LD)]

My Lords, with the permission of the Grand Committee, I would like to speak sitting down. I have added my name to Amendments 67 and 68, and I will not repeat the points that my noble friend Lord Storey has already covered, although I completely agree with them.

I, too, want to focus on children with medical conditions. We have had a lot of information, but I have met three or four children with differing conditions. The problem is when schools do not recognise a medical condition. A young man aged 18 with ME had a statement, but it was for his behaviour, not for his medical condition. Even after the consultant wrote to the school, the school refused to believe that the condition existed. A girl with a congenital heart condition was taking an exam. The invigilator had not been informed about the technical equipment she had to wear, and she was pulled out of the exam. Cancer has already been mentioned. There have certainly been some serious educational support issues. I met one young lady who, in the year she had off from formal schooling, had one supportive teacher who kept in touch academically and socially. None of the others did. Home tuition via the local authority was extremely patchy and had not linked up with the school, and nor had the hospital school. As a result, the year was, in her phrase, “entirely haphazard”.

Children and Families Bill

Lord Patel Excerpts

Tuesday 2nd July 2013 Lords Chamber

[Lord Patel]

My Lords, I wish to speak about Part 3, which is mainly concerned with the reform of special educational needs and disability.

I commend the Government for recognising that the system with which families have to contend to secure the right services for their children is adversarial and in need of improvement. The many, many charities and organisations—such as Together for Short Lives; CLIC Sargent, a charity that deals with children with cancer; Scope; the National Deaf Children’s Society; charities related to children with autism; and many others—have highlighted through the evidence that they have gathered that the disjointed system of care presents many challenges for the families of children with life-limiting conditions.

There are nearly 39,000 children and young people with life-limiting and life-threatening conditions. Up to 1,600 children aged up to 15 and 2,000 aged between 16 and 24 are diagnosed with cancer each year. Nine out of 10 of these children feel that their diagnosis and treatment make a difference to their school lives. Many others have other serious and life-threatening conditions. Children who have different needs and require complex, individualised health interventions also need additional social care and educational support. The families of these children routinely deal with more than 30 professionals, from education, social care, health and other services. Communication between agencies is generally inadequate, adding further stress to families and children. While this is stressful for families of children with disabilities and long-term conditions, for families whose children’s lives are likely to be short it is particularly distressing. One parent said:

“It’s a minefield and you get frightened going through it. Services don’t join up and people don’t explain things to you. They don’t tell you what all the services actually do. By the time I had made it all fit together my child had passed away—that makes me sad that he could have had so much more out of life”.

Evidence shows that for these children the best outcome is achieved when there is an effective partnership between parents and services and care is co-ordinated around the needs of the child. I felt the Government had got it right when they proposed integrated health, education and social care assessment plans, improving joint commissioning between local agencies. Alas, the Bill was changed and I concur with the comments of the noble Baroness, Lady Hughes of Stretford. The Government have withdrawn to a position in the Bill whereby only children who have special educational needs will be able to benefit from these reforms. Why did the Government change their mind?

Many children with complex health conditions, including cancer, cystic fibrosis and many other diseases mentioned by other noble Lords would benefit from a single education, health and care plan—the so-called EHC plan—but would not meet the requirements for a SEN statement. It cannot have been the Government’s intention to exclude these children. It also flies against the recommendation made by the Education Select Committee in the other place and the Government’s stated aim to remove the graduated approach to SEN. Up to a quarter of disabled children do not have a SEN statement. What plans do the Government have to integrate assessment and services for this group of children?

Clause 30 requires a local authority to produce information on education, health and care services “it expects” to be available locally, known as the “local offer”. This has the potential to speed up access to services and to increase confidence in the system. The added provision to assist children transitioning from childhood to adulthood is to be welcomed. However, Clause 30, which deals with this, is not strong enough to ensure that the benefits of the new local offer will be realised, as other noble Lords have commented. First, a local authority will have to set out only the provision “it expects” to be available in the local offer. That wording is not strong enough to provide redress for parents or young people if those services are not available. Secondly, there is too much scope for variation between local areas in services that will be specified. Clause 30 would be strengthened by a legal duty to provide what is set out in the local offer, which would enable parents and young people to challenge local authorities. I hope the Minister is sympathetic to that, as the feeling is quite strong that such a duty should be in the Bill.

Also required in the Bill is a common framework to inform the development of each local offer. I am concerned, too, that the Bill’s focus on education means that a once-in-a-generation opportunity to join up services for all disabled children and young people, particularly around the transition from children’s to adult services, is being lost. Young people between the ages of 18 and 25 who may move in and out of education or leave education altogether will not have access to a single EHC plan and will lose access to support. This will include many young people who need palliative care who, owing to the complexity of their conditions, do not continue in education. This Bill, in addition to the Care Bill, which we continue to debate in Committee, will bring about two different systems for young disabled people who transit from children’s to adult services in England, depending on their educational status.

The Bill provides an opportunity to ensure that young people with complex conditions, or diseases such as cancer, up to the age of 25 continue to have access to an EHC plan, regardless of their educational circumstances. I hope that the Government feel sympathetic to this and that they take this opportunity to ensure that it happens. I look forward to the Minister’s response.