Tuesday, 13 January 2015.
Government of Wales Act 2006 (Amendment) Order 2015
Motion to Consider
My Lords, I beg to move that the draft order laid before the House on 5 November 2014 now be considered. I will provide noble Lords with a brief summary of what it seeks to achieve. The UK Government are making this order at the request of the Welsh Government. The National Assembly for Wales is currently considering legislation relating to sustainable development in the Well-being of Future Generations (Wales) Bill. The stated intentions of the Bill are to enhance the sustainable development duty on Welsh Ministers and to make sustainable development the central organising principle of the Welsh Government and of other public bodies in Wales exercising devolved functions.
However, Section 79 of the Government of Wales Act 2006 already imposes a duty on Welsh Ministers in relation to sustainable development. To avoid Welsh Ministers being subject to two separate duties, the Welsh Government wish to be able to amend Section 79. Currently, the Assembly does not have the legislative competence to do so. As a result, the UK Government have agreed to use the power under Section 109 of the Government of Wales Act that allows Her Majesty, by Order in Council, to amend Schedule 7 to that Act and thus confer the required competence upon the Assembly.
If passed, this order will enable the Assembly to amend Section 79 of GOWA, which in turn would allow the Welsh Ministers’ obligations to be aligned with the duties contained in the Bill. Section 79 was created in GOWA in 2006, when only executive competence existed in Welsh devolution. Following the referendum in Wales in 2011, the Assembly obtained full legislative competence for the subjects in Schedule 7 to the Government of Wales Act. This order therefore reflects the evolution of Welsh devolution since 2006. Section 109 requires the order to be approved not only by both Houses of Parliament but also by the National Assembly for Wales. The order was approved by the House of Commons on 15 December, and the debate in the Assembly is expected to take place on 20 January.
I believe that this order demonstrates the UK Government’s continued commitment to work constructively with the Welsh Government to achieve an effective devolution settlement for Wales. I hope that noble Lords will agree that this order is a sensible use of the power in Section 109 and that the practical result is something to be welcomed. I commend the order to the Committee.
My Lords, I rise to ask for clarification from the Minister. I do not think that many people would want to block the order, because it seems a patently sensible thing to do—but if the House did not pass this order, it would be a case of the unelected Peers blocking the wishes of both the elected House of Commons and the elected National Assembly for Wales. That strikes me as a rather unsatisfactory position to be in—albeit that the powers are being used in this instance with a recommendation and to move forward.
Secondly, the Minister said that the Assembly is “currently considering legislation”. I assume that those words were carefully used. Does that mean that the Assembly is currently considering legislation outside its powers? Are there issues that arise from that possibility? Is it outside its competence? If that is the case, are we asking for powers for retrospective action in order to put right something that has already been carried or debated, possibly outwith the Assembly’s powers? All these areas need clarification to avoid any instance arising, perhaps in circumstances more contentious than this. The objective of this order is probably acceptable to everyone, but one can imagine circumstances where that might not be the case and where there could be great difficulties.
I rise briefly to support this order. I followed the question asked by the noble Lord, Lord Wigley, with some interest. As I understand it—I hope the Minister will confirm this, and I think she did so in her opening speech—the order confers further legislative power on the Assembly to promote the Bill that is before it. If it is that, I fully support it. It is part and parcel of the staged process of the evolution of legislative competence contained in the 2006 Act. I know that there are many critics of that process, but it has served the Assembly and the Welsh Government well over the years, prior to the referendum and the Assembly’s full legislative competence. Will the Minister confirm that this is a process of conferring further legislative power on the Assembly to fulfil its wishes to introduce this Bill and carry it through?
If it is, we should hope it is the last such order, because there is unanimity across all parties that for legislation we should move from a conferred powers model to a reserved powers model. That was what the Minister assured us when she was taking the last Bill through the House. The process she described is now in full swing, and I hope that in the near future the proposed reserved powers arrangements will see the light of day. If, as I suspect, this will be the last such order, we should recognise that. I think I am in a minority, but I believe the process that was created to introduce legislative competence was sensible. It was part of a sensible staged process to transfer legislative power, but it is now redundant. I hope that this is the last order of this kind and that we will go over to a reserved powers model.
The title of the Bill that is the driving force behind this order is the most ambitious and courageous title I have ever seen. Over many years, I have heard Ministers making the case that their Bills will improve people’s well-being, but I have never seen the words “well-being” in the title of a Bill. The Well-being of Future Generations (Wales) Bill is an amazingly ambitious and courageous title. I sincerely hope that the performance that flows from the Bill will match it.
I realise that it is not within our competence to discuss the Bill, but considering that we are enabling it to go ahead and are supporting it, I hope it is within the bounds to ask the Minister to give us some idea about the costs that the Bill might incur. The Bill will place a duty on local authorities and a series of public bodies to promote and develop sustainability. At this stage, particularly in local government, there are horrendous problems of finance. I hope that the Bill will not create costs for local government that it cannot sustain.
The Bill that will eventually come forward is about the public sector. As I understand it, the private sector and the third sector will be covered by something called a sustainable development charter. I have not had sight of this charter. If the Minister is in a position to clarify what the charter might be, it would be helpful as a piece of background to an order which I and, I am sure, everybody else will support.
I, too, welcome the amendment order. I also welcome the work being carried out by the Welsh Government in their Well-being of Future Generations (Wales) Bill. The order will help the Welsh Government to pass one of what they consider to be the few laws of its kind in the world. It is a Bill which will put sustainable development at the heart of public service governance in Wales. I also recognise that the Welsh Government see it as their commitment to pass on a better quality of life to their and my children and grandchildren.
The Welsh Government have recognised the systemic weaknesses in the present governance structures for sustainable development in Wales. The Bill will, or should, ensure that they set objectives that match the goals set out in it. The Bill allows the Welsh Government to address further the complexity and unintended consequences that arose from partnership working: overlap and duplication, resulting in increased costs in the planning process. Efforts had already been made in Wales to address this problem—but, even as recently as March 2014, Denbighshire Local Service Board identified 84 partners in the county that it was supposed to work with, and that was not a comprehensive list.
I also welcome the new well-being goals listed in the Bill and the common sense of purpose that they set out for public bodies in Wales. These goals and their descriptors should ensure that such bodies share responsibility for achieving the long-term, economic, social and environmental well-being of Wales.
Although I welcome the Bill now going through the Assembly, it smacks slightly of motherhood and apple pie—or perhaps I should refer to it as “ambitious”, as the noble Lord, Lord Rowlands, did. Perhaps I may ask the Minister a couple of questions, echoing the first question asked by the noble Lord, Lord Wigley. At exactly what stage is the Bill in the Assembly and to what extent has it been scrutinised there?
My Lords, I shall be very brief and build on what my noble friend Lord Rowlands said; that is, I hope that this is the last measure of its kind—I will ask a question or two later as to progress in other legislative fields. I also echo the noble Baroness in saying that the Bill may be aspirational in that duties may be being laid on local authorities without the resources to accompany them.
When I saw on the Order Paper the rather grand title,
“Constitutional Law. Devolution, Wales. The Government of Wales Act 2006 (Amendment) Order 2015”,
I eagerly rushed to find out more about it, and I hope that I am not being too critical when I say that it should perhaps have been the “Much Ado About Nothing” Order, since no one can possibly be against it and query whether the relevant resources will be given. I wish that the Assembly could have acted within the spirit of what has now been agreed, because the 2006 Act seems to have been in a very different context and a very long time ago. Now the context is very different: one of reserved powers rather than the conferring of specific powers. This, of course, therefore makes it a rather convoluted process.
We have in the Chamber looked at some of these questions at some length during proceedings on the last Wales Act, which we have just passed. I assume that that legislation does not affect this order in any way. However, during the passage of what became the Act we talked about the need for a presumption in favour of the passage of competences to the Assembly, rather than to enumerate them here. I think I recall the Minister mentioning St David’s Day and saying that there would be another Bill, for which obviously there will be no time before the election. Perhaps she can indicate whether that new Bill will make this sort of order totally unnecessary in future, and comment on what stage has been reached in consultations on the proposed Bill, which presumably will now take a year or two because I cannot imagine anyone seriously being against it in spirit.
I thank the Minister for outlining the changes proposed. When the National Assembly for Wales was established, it was one of the first legislatures in the world to have sustainable development as a duty within its founding principles.
The Welsh Assembly has already established a reputation as a pioneer in the area of sustainability. It successfully introduced a 5p charge for carrier bags in 2011—a brave yet successful move that has led to a 76% drop in bag usage. In fact, you feel very guilty going to the shops today in Wales if you do not carry a reusable bag. This legislation is being copied by other legislative bodies across the UK. Charging for plastic bags is just one symbol of what can be done in the area of sustainability. Recycling rates have rocketed in Wales and there is a commitment to encourage public bodies to buy local food.
The Welsh Government are currently required to promote sustainable development in their policies and to produce a scheme on how this will be achieved. Wales retained the independent commissioner role when the UK Government decided to end the UK Sustainable Development Commission and has since established the post of Commissioner for Sustainable Futures, ably and competently led by Peter Davies and supported by a strong team in Cynnal Cymru.
However, it is clear that embedding sustainability as the central organising principle when it comes to policy development and delivery at Welsh Government level has not occurred to the extent that was hoped. It is generally agreed that there is a need to strengthen the procedures and governance structures to ensure that sustainability is seen not just as a reporting process but a central theme in policy development. On top of that, it is worth noting that the duty to act sustainably applies only to the Welsh Government and does not have any traction across the wider public sector. To that end, the Welsh Government have introduced a Well-being of Future Generations (Wales) Bill. Ambitious it may be, but there is nothing wrong with ambition.
Whether they give it the kind of resources that may be necessary is obviously a matter for the Assembly. That Bill is due to be agreed, as I understand it, in the spring of this year. It will establish a new statutory sustainable development body with legal powers. It will also ensure that not just Assembly bodies but wider public sector organisations make progress to contribute to the well-being of a sustainable Wales. In addition, the new Bill will be in step with global developments being aligned to the UN process of establishing global sustainable development goals, which will be set this year and will apply to all nations.
We therefore wholeheartedly agree to the request to allow the National Assembly of Wales to amend Schedule 7 to the Government of Wales Act 2006, which will enable the Assembly to make modifications to Section 79, relating to sustainable development. It is important that this right is given to allow amendments to ensure that the new legislation does not simply add a layer of requirements on government but will contribute to the formation of a holistic, clear framework that does not duplicate but builds on the experience of applying the original requirement of sustainable development in the Government of Wales Act.
My Lords, I strongly welcome the support that there has been for the concept behind the order before us today. I remind noble Lords that it is of course our job to facilitate the Bill that several noble Lords have referred to, rather than to discuss the Bill itself—but I will of course answer noble Lords’ questions.
The noble Lord, Lord Wigley, referred to the unelected nature of this House, which is something that might divide opinion here. I entirely understand his comments but will say to him that there is considerable expertise in the House—a lot of it in relation to Wales—gathered here this afternoon. We have a very valuable role to perform in scrutinising legislation, and it is important that we continue to take that role very seriously.
The noble Lord asked whether the Bill was currently outside the competence of the Assembly. What we are doing is enabling the Welsh Government to bring forward an amendment that would allow them to change their competence. The Bill, as it currently stands before and is being discussed by the Assembly, is within its competence. The Welsh Government want to amend it to extend the competence very slightly—I emphasise “very slightly” because this is marginal. The noble Lord, Lord Rowlands, referred to that very point in his comments.
There was a previous order in 2010, and indeed one in 2007, when the second Government of Wales Act came in. However, like the noble Lord, I hope that we will get to a reserved powers position soon and that that will create a tidier devolution settlement that will make such orders unnecessary in future. However, whether or not we have to pass another order like this is entirely up to the Welsh Government. This is being done at their request, and if they identify in any other legislation that they are taking through at the moment that they need those additional powers, or a change in powers, it will behove us to facilitate that and to enable it to happen by passing these orders through both Houses.
The noble Lord, Lord Rowlands, said the Bill was ambitious. I will point out that the Assembly has always been ahead of the curve on sustainability, because when it was established it was given a sustainability duty, which was exceptional at that time. The noble Lord also asked about costs. There are already local service boards that will fulfil much the same functions, although they do not have the sustainable development duty in the same way as is proposed now, so the costs might not be as great as one might assume. Having said that, this issue is not for us but for the Assembly.
My noble friend Lady Humphreys asked about the stage the Bill is at. It is currently at stage two of the scrutiny process in the National Assembly and is expected to be completed in March. The noble Lord, Lord Rowlands, asked about the Wales Sustainable Development Charter, which all sectors can sign up to and adopt. It follows the principles of sustainable development and currently there are private/public and third sector signatories to it.
The noble Lord, Lord Anderson, expressed concern about the resources involved. Once again I say to noble Lords that this is an issue for the Welsh Government and the Assembly. The 2006 Act was indeed passed in a different context, and I would point out to the noble Lord that the reason the section has to be amended by this order is a hangover from the days when the Assembly had only executive powers and did not have legislative competence. The Wales Act 2014, which we have just passed, does not affect this directly and it is hoped that, assuming we move as this Government intend—and for which we have support across the House—to a reserved powers model, there will be a fresh start with a clearer set of powers for the Assembly.
The noble Baroness, Lady Morgan, pointed out the interesting culture change we have all undergone in Wales as a result of the 5p plastic bag charge. Over the Christmas Recess I found myself explaining to some friends in England how extraordinary that culture change has been. It is a small but very important example of the importance of ambition for sustainability —but, once again, our job here is to facilitate that ambition by enabling the Welsh Government to amend the Bill so that they can promote the responsibility and the duty towards sustainability rather than observe it. I commend the order to the Committee.
Reservoirs (Scotland) Act 2011 (Restrictions on Disclosure of Information in relation to National Security etc.) Order 2015
Motion to Consider
That the Grand Committee do consider the Reservoirs (Scotland) Act 2011 (Restrictions on Disclosure of Information in relation to National Security etc.) Order 2015.
Relevant document: 14th Report from the Joint Committee on Statutory Instruments
My Lords, the main purpose of this order, which was laid before the House on 18 November 2014, is to confer on the Secretary of State powers in relation to reservoirs in Scotland that are similar to powers that the Secretary of State already has in relation to reservoirs in England and Wales. They will ensure that a coherent national security regime is in place in relation to reservoirs across Great Britain. The order is made under Section 104 of the Scotland Act 1998, which allows for necessary or expedient legislative changes to be made in consequence of an Act of the Scottish Parliament. This particular order is made in consequence of Sections 9 and 55 of the Reservoirs (Scotland) Act 2011, which I will refer to as the 2011 Act.
The 2011 Act provides for a new regime for regulating the construction, alteration and management of controlled reservoirs in Scotland, particularly in relation to the risk of flooding from those reservoirs. When fully commenced, the 2011 Act will replace the current regime which operates under the Reservoirs Act 1975 in so far as it extends to Scotland.
Section 9 of the 2011 Act requires the Scottish Environment Protection Agency—SEPA—to establish and maintain a public register of controlled reservoirs in Scotland. The register must include, among other things, maps showing areas of land that would be likely to be flooded in the event of an uncontrolled release of water. Section 55 of the 2011 Act provides for the preparation and publication of flood plans for controlled reservoirs. The plan must set out the action to be taken by the manager of the reservoir to control or mitigate the effect of any flooding likely to result from an escape of water from the reservoir.
Noble Lords will readily appreciate that some of the information in the maps and plans that I have just mentioned, which will be gathered and stored by public bodies and others under the 2011 Act, could be used in a harmful way if in the wrong hands. As the Committee may well be aware, the Scottish Parliament does not have the legislative competence to make provision in relation to national security matters, as these matters are reserved to the United Kingdom Parliament under Schedule 5 to the Scotland Act 1998. Therefore, this order will empower the Secretary of State to serve a non-disclosure notice on the Scottish Ministers and SEPA if the Secretary of State is of the opinion that disclosure of any information about a controlled reservoir in Scotland would be contrary to the interests of national security. This will prohibit the disclosure of the information by Scottish Ministers and SEPA, and, in particular, will ensure that the information is excluded from the public register.
The order will also empower the Secretary of State to serve a non-publication notice on any relevant person if the Secretary of State is of the opinion that publication of a flood plan, or any information relating to the plan, would be contrary to the interests of national security. For the Committee’s information, a “relevant person” is defined by Article 2 of the order and includes those who are required to prepare or publish flood plans. As I indicated at the outset, the Secretary of State already has similar powers in relation to reservoirs in England and Wales, and this order puts in place appropriate provision for Scotland. The order will also make it an offence to fail to comply with a requirement of a non-publication notice.
Finally, the order will update the definition of the “Scottish regime” in Schedule 4 to the Flood and Water Management Act 2010 to clarify that the 2011 Act will now provide for the regulation of the construction, alteration and management of controlled reservoirs in Scotland, rather than the regime that currently operates under the Reservoirs Act 1975.
I consider this order to be a sensible use of the powers under the Scotland Act 1998 and I believe that it demonstrates once again this Government’s continued commitment to working with the Scottish Government to make the devolution settlement work. The order was debated in Committee in the other place earlier this afternoon. I commend the order to the Committee. I beg to move.
My Lords, I do not have the loquacious back-up that my noble friend Lady Morgan of Ely had—I am afraid that it is just me. Once again, I thank the Minister’s staff for the very clear notes. I hope that the Minister will be delighted to hear that I entirely agree with every word he said. It is competent, it is realistic; the security will remain. Unfortunately, recent events have compounded such concerns. I know that is not related to why we are here, but it is certainly a very big factor. The only thing I worry about is alerting people to the possibility of doing damage to reservoirs. I know that we cannot hold meetings in camera, but sometimes I wonder whether we should.
Paragraph 10 of the notes sent out by Ms Lopinska says that the House of Lords Secondary Legislation Scrutiny Committee did not draw this piece of legislation,
“to the special attention of the House of Lords. Nonetheless, this issue may come up during debate”.
Well, it is coming up only because I do not understand it. If the Minister were able to help me with that, I would be delighted. Having said that, it is a sensible move, it is quite apt, and it has our full support.
My Lords, I am very grateful to the noble Lord, Lord McAvoy, for welcoming this order, and I underline again the fact that we are constantly aware of and sensitive to issues of national security.
The position with regard to the Secondary Legislation Scrutiny Committee is that it sought further information on this order from the Scotland Office. The committee noted that the order would empower the Secretary of State, if they were of the opinion that the publication of a flood plan or any information relating to a flood plan would be contrary to the interests of national security, to serve a non-publication notice on any relevant person, but that people living in proximity to a reservoir would need to know about a flood plan in the interests of their own safety; therefore, non-publication of a flood plan runs the risk of placing such people in jeopardy. The committee asked whether this was the case and, as there is a wider public interest in such non-publication procedures, why there was no public consultation on the provisions of this order—this is in appendix 2 to the 16th Report of the Secondary Legislation Scrutiny Committee.
The Scotland Office provided a response to that point, indicating that flood plans under the Reservoirs (Scotland) Act 2011 are on-site flood plans only. They cover only what the reservoir managers themselves would do in the event of either a potential or an actual controlled release of water from a reservoir. They are not intended to replace off-site emergency response plans. That would be the responsibility of the local strategic co-ordinating group under the civil contingencies legislation. It was noted that full public consultation on the Act was carried out prior to its introduction in the Scottish Parliament, and in addition that regulations will be made under Section 55 of the 2011 Act that will introduce a requirement to produce flood plans, and these will be fully consulted upon. It would appear that, after the information was given in response to the committee’s request, it did not think it necessary to report it to the House—and that, by implication, it was satisfied with the response. I hope that that answers the noble Lord’s question.
Transfer of Tribunal Functions (Transport Tribunal) Order 2014
Motion to Consider
My Lords, I will refer to this order as the transfer order. The purpose of the order is to transfer the quality contract scheme jurisdiction of the Transport Tribunal into the Upper Tribunal. The Transport Tribunal currently sits outside the unified tribunal structure. Most of the jurisdiction of the Transport Tribunal was transferred to the First-tier Tribunal and the Upper Tribunal in 2009. However, the Transport Tribunal could not be abolished at that time as it remained necessary to hear appeals resulting from proposed quality contract schemes, introduced by the Transport Act 2000, as amended, and to hear appeals under the Transport (Scotland) Act 2001 for bus timetabling.
Article 2 of the order transfers the functions of the Transport Tribunal that relate to quality contract schemes to the Upper Tribunal. Schedule 1 makes consequential amendments to the Transport Act 2000, and Schedule 2 contains transitional and saving provisions. Transitional provisions ensure that if any existing case were to start before this order is approved, it would start in the Transport Tribunal and would not be adversely affected by the transfer. A case that has begun but is incomplete will be determined by a panel comprised of the same judicial members. Directions and orders made by the Transport Tribunal prior to the order coming into force will continue in force as if they were directions or orders of the Upper Tribunal.
Under powers in the Transport Act 2000, local authorities are able to determine local bus services by establishing a quality contract scheme, which suspends the deregulated bus market in a defined area and specifies what bus services will run in that area. Other than specific exceptions, no other bus services are then permitted. Before doing so, the authority must undertake a consultation exercise with affected parties. If the local authority wishes to pursue a quality contract scheme after consultation, its final proposal must satisfy a public interest test that involves the proposal being examined by a quality contract scheme board chaired by a traffic commissioner, who determines whether the making of a quality contract scheme by the local authority is the only practical way of implementing its transport policy in the area in an economic and effective manner. Statutory consultees currently have a right of appeal to the Transport Tribunal, as does the local authority.
Why are the Government taking this action? Integrating the quality contract scheme jurisdiction into the unified tribunal structure will provide the flexibility to utilise the pool of Upper Tribunal judges and panel members who already have the necessary expertise in the law of their jurisdiction to hear transport-related appeals as the need arises. The Senior President of Tribunals could ticket appropriate judges to hear the quality contract scheme cases.
Although it would still be necessary to retain the Transport Tribunal to deal with any potential appeals under the Transport (Scotland) Act 2001 for bus timetabling, it is expected that these will be transferred to a suitable devolved tribunal in Scotland in due course via secondary legislation made under the Tribunals (Scotland) Act 2014, once the necessary structures are in place.
The Government are committed to the ongoing transformation of our tribunals, placing the user at the heart of the service. This order further implements the legislative changes enacted by the Tribunals, Courts and Enforcement Act 2007 by transferring the quality contract scheme jurisdiction of the Transport Tribunal into the Upper Tribunal. The Government believe that the transfer of the quality contract scheme jurisdictions to the unified tribunals structure will benefit all users of the jurisdiction who seek judicial redress and will provide access to a more coherent, swift and responsive system. I therefore commend this draft order to the Committee.
My Lords, I have no wish to detain the Grand Committee any longer than necessary. I have no issues with the order. As the noble Lord said, the transfer of the functions of the Transport Tribunal which relate to the quality contract schemes to the Upper Tribunal is another step along the way to a unified tribunal service which, as the Minister said, came from the previous Government which put the Tribunals, Courts and Enforcement Act 2007 on the statute book.
Will the Minister tell the Grand Committee why the Government opted for the Upper Tribunal as the preferred outcome, which was suggested by a number of responders, including local authorities, rather than the First-tier Tribunal, which was the bus operators’ proposed option? The hybrid option was ruled out by the Government, which was sensible and right as it would not provide clarity but would have caused confusion. I note that two schemes are going to come forward. I will not make a joke about two coming at once on the day of the bus strike but will leave it there.
I am grateful to the noble Lord for his support for this proposal. As he rightly said, this is pursuant to the previous Government’s attempt to bring all the tribunals under one umbrella.
In answer to his question about why the Upper Tribunal of the unified tribunal system was chosen to hear quality contract scheme appeals rather than the First-tier Tribunal, the Upper Tribunal was considered the appropriate appeal designation to hear these appeals as it would avoid two rounds of appeal within the tribunal system, which could unduly delay the implementation of schemes where they are in the public interest.
Taken together, the quality contract scheme board and the other tribunal will provide two levels of independent scrutiny and will utilise the existing Upper Tribunal judges and panel members, who already have the necessary legal expertise, to hear these transport appeals. There will also of course be an onward right of appeal on a point of law and exercisable only with the permission of the Court of Appeal, which provides an additional safeguard.
This instrument supports the Government’s continuing commitment to implement the provisions of the 2000 Act and to provide a unified tribunal structure to meet the needs of users. In those circumstances, I commend this draft order to the Committee.
Youth Justice Board for England and Wales (Amendment of Functions) Order 2014
Motion to Consider
My Lords, the order before us today amends the Youth Justice Board for England and Wales Order 2000, which was made under Section 41(6) of the Crime and Disorder Act 1998. The order gives the Youth Justice Board for England and Wales—the YJB, as it is customarily known—additional functions so that it can more effectively and efficiently fulfil its statutory role to oversee the operation of the youth justice system in England and Wales.
This draft order deals with four provisions. These relate to the YJB’s grant-making powers, its role in the temporary release of young people from secure training centres, its power to commission education provision in young offender institutions and its ability to assist in the development of IT systems underpinning the youth justice system. I will briefly describe for the Committee the effect of each provision and our reasons for making these changes.
The first provision, set out at Article 2(c), extends the scope of the YJB’s function to make grants to local authorities and other persons, allowing it to respond more effectively to the evolving needs of local youth justice services. The YJB’s current grant-making function dates from when the board was established by the Crime and Disorder Act 1998. At present, the board, subject to the approval of the Secretary of State, may provide grant funding to local authorities and other bodies for the purposes of developing good practice and commissioning research on issues affecting youth justice. One such example of a grant provided by the board is the annual youth justice good practice grant made to all youth offending teams in England and Wales.
At the time of the establishment of the YJB and local youth offending teams, the scope of the board’s grant-making powers was appropriate. However, the Government’s triennial review of the YJB, laid before Parliament in November 2013, concluded that the purpose of the grant-making power was now outdated and limited. This order acts on the review’s recommendation by widening the YJB’s powers so that it can make grants to local authorities and others for the purposes of the operation of the youth justice system and the provision of youth justice services. This will increase the scope of services for which the grant money can be used, thereby better responding to the evolving local priorities of youth justice and promoting improved front-line delivery.
Noble Lords may well be aware that at the same time as we are seeking to broaden the YJB’s powers to make grants to local authorities, we are also conducting a stocktake of youth offending teams, or YOTs. The aim of this stocktake is to establish a clear picture of how YOTs are operating and to make sure that we are providing the best support possible to young people and their communities. While the details of the stocktake are being finalised, we nevertheless believe that now is the right time to amend the board’s grant-making powers so that funding can be better targeted to the evolving needs of youth justice services locally and that there should be no delay in bringing about this important reform.
The second provision, set out at Article 3(3)(a) of the draft order, gives the YJB a new power, concurrent with the Secretary of State, to release young people temporarily from secure training centres—STCs—a form of youth custody. Where young people are risk-assessed as suitable for temporary release without compromising security or public protection, permission will be given for them to leave the establishment for an agreed period to undertake constructive activity with the aim of supporting their effective resettlement in the community after release. Temporary release from custody can be used to enable young people to attend interviews and training courses or to arrange accommodation ready for their release. Making more effective use of temporary release to support resettlement is an objective of the Government’s Transforming Youth Custody programme.
At present, the process of temporary release from STCs is overseen by a combination of the National Offender Management Service—NOMS—on behalf of the Secretary of State and the directors of STCs. As it is the YJB rather than NOMS that is responsible for commissioning and monitoring the delivery of youth custodial services in STCs, we believe that the board is better placed to oversee the temporary release process. This instrument will enable the board to release trainees from STCs temporarily. Under this proposal, STC directors, in conjunction with youth offending teams, will assess a young person’s suitability for temporary release and submit applications for the YJB to approve. The YJB’s expertise and knowledge will ensure that there is greater consistency in the use of temporary release and that activities properly balance the benefits to the young person with public protection considerations.
The third provision, set out at Article 3(3)(b) of the draft order, has also arisen from the Government’s Transforming Youth Custody programme. In line with our aim to put education at the heart of youth detention so that young offenders can equip themselves with the skills to lead productive, crime-free lives, the provision gives the YJB a concurrent power with the Secretary of State to contract for the provision of education in directly managed young offender institutions.
The YJB currently commissions custodial provision in YOIs from NOMS, while the education provision in these directly managed establishments is commissioned and managed by the Education Funding Agency, an executive agency of the Department for Education which manages funding to support all state-provided education for children and young people up to the age of 19. The result of having separate commissioners of custodial and education provision in YOIs is a lack of integration between the two services. As a consequence, young people in YOIs receive an average of only 12 hours’ education a week, with classes frequently disrupted to facilitate appointments and other interventions.
Giving the YJB the power to commission and manage the provision of education in directly managed YOIs will promote the more effective integration of custodial and education services by creating clearer and stronger accountability arrangements. The board has considerable experience in commissioning and managing contracts in the youth custodial estate, and this change will ensure that the new education contracts in YOIs, which we announced in December and which will more than double the number of hours that young people spend in education, will be robustly managed and better meet the needs of young people.
The final provision, set out at Article 2(c) of the draft order, is intended to enable the YJB to make the best use of its skills and knowledge of the information technology systems used in the youth justice system. The provision will enable the board to provide assistance to local authorities and others in relation to the development, management and maintenance of IT systems. Youth justice IT systems are in place to facilitate the flow and management of information between local authorities, youth custodial establishments, the YJB and others who work directly with children and young people. This exchange of information, and the IT systems that underpin it, are therefore vital.
The important role that the board plays in overseeing the operation of the youth justice system means that it is highly knowledgeable about the needs and requirements of these information technology systems and their users. The board ought therefore to be in a position to assist local authorities, the Secretary of State and others to make adjustments to these systems to fit the evolving requirements of the youth justice system. This draft order will give the board a clearer remit to assist local authorities and others, such as IT suppliers, in the development, management and maintenance of these systems. For example, the YJB would be able to help local authorities co-commission services from case management suppliers.
As a whole, the provisions in this draft order will enable the YJB to discharge its functions more effectively, thus improving the overall operation of the youth justice system. Our intention is to give the YJB the powers it needs to tackle offending and reoffending by young people. The challenges the board faces now are not identical to those it faced when it was established in 1998, and it is right that we amend its powers to reflect this. Fewer young people are entering the criminal justice system and fewer are ending up in custody, which I am sure is welcomed on all sides. These are significant achievements, and this draft order will ensure that the YJB is able to continue building on this success while supporting new approaches to tackling what can be stubbornly high reoffending rates. I beg to move.
My Lords, I thank the noble Lord, Lord Faulks, for setting out the details of this order for the Grand Committee to consider this afternoon. As the noble Lord explained, the order both amends the functions of the Youth Justice Board for England and Wales and grants it new powers. Of course, we can look back to earlier in this Parliament when the Government were talking about the bonfire of the quangos and the Youth Justice Board was firmly in their sights. Thankfully, we on these Benches saw off that threat and now the noble Lord’s predecessor, the noble Lord, Lord McNally, is the chair of the Youth Justice Board—how things change!—and we wish him well.
I would like to put on record my thanks to the Youth Justice Board for the work it does in England and Wales and its many achievements. I have a number of points to make and a few questions for the noble Lord. First, I welcome the proposals to extend the ability of the Youth Justice Board to award grants to local authorities or other bodies working in the youth justice system. Will the Minister say something about the level of funds that are going to be available to make grants from? Is there any new money here or is it just new powers and grants from existing budgets, with no new money?
Secondly, the order gives the Youth Justice Board the new function of assisting other relevant bodies with IT support. Anything that involves IT always worries me as I have seen so many things go wrong due to poor planning, poor procedures and problems around IT. The words “overpromise” and “underdeliver” are usually in my mind when it comes to IT projects. Will the noble Lord tell the Grand Committee a bit more about what is planned here? What assurances can he give the Grand Committee about the protection of data? These are people’s data and, in this case, young people’s data. How can we be assured that these data will be protected and kept secure? Will the Youth Justice Board have the necessary funds to ensure that this important function is done properly?
I welcome the proposal to allow the Youth Justice Board to enter contracts for the provision of education in young offender institutions. Good quality education and purposeful activity for the young people held in these institutions is of paramount importance and more must be done in this area. Will the noble Lord tell the Grand Committee how he sees standards being improved in the coming period? There are lots of data and other pieces of evidence about the education level achieved and the number of people who suffer from some form of learning difficulties going through the criminal justice system. It is essential that educational achievement is improved as part of rehabilitating these young people—I am delighted to hear that fewer young people are going through the system now—so that they can return to make a proper contribution to society and not be in a revolving door in and out of these and similar establishments. With those points, I am happy from these Benches to support the order.
I am grateful to the noble Lord, Lord Kennedy, for his observations about the Youth Justice Board, which will be conveyed to it. Of course, the noble Lord, Lord McNally, the distinguished chairman of the board, has previously stood where I now stand and has had many of his proposals thoroughly scrutinised by the party opposite, including the proposal to get rid of the Youth Justice Board altogether. However, wise counsel prevailed on that occasion, and it continues to perform its function well, as the noble Lord quite rightly said.
He asked me a number of questions about the grants, including whether there be more money for the YJB for grants. This is really not about extending the function of the YJB or the YOI; the aim is to increase flexibility in how the YJB awards grants and how the money is spent. On the question about youth justice grant levels, the grant is allocated from within the Youth Justice Board’s overall budget, and there are significant challenges in meeting the savings, as the noble Lord will be aware, that all departments and arm’s-length bodies must make next year. We need to get this right. However, I am aware that youth offending teams need to plan their resources. We are close to reaching an allocation for the board, and we expect that youth offending teams will be informed soon.
I am sure that the noble Lord will accept that the youth justice IT system is a vital communication tool enabling information about young people to be shared across the youth justice system. He was concerned about the protection of data. This is, of course, not something that has been overlooked. The YJB will not be handling additional personal data as a result of these reforms, so there is no change in the risk in terms of data. This will give the YJB greater freedom to assist in the development of its systems.
There is a great deal I could say about how the youth justice IT systems are currently working, although I am not sure that the Committee would thank me for a lengthy answer. Perhaps I may just say that examples of the current systems include Connectivity, which provides a secure information-sharing mechanism between agencies in the youth justice system. I hope that the security of the programme will reassure him on the question of data. The eAsset sentence management system is used to support the placement and ongoing case management of young people in custody. The Youth Justice Management Information System collects, shares and analyses end-to-end management information, supporting better decision-making about vulnerable young people.
Lastly, the board currently has the power to identify, make known and promote good practice within the youth justice system, but at the moment this does not extend to providing assistance directly to local authorities and other persons in relation to the operation of the youth justice system and, in particular, in relation to their IT systems. Contracts for central IT systems—that is, those which are not held by local authorities—are and will continue to be held by the MoJ. The costs information we have shows that Connectivity and annual running costs are put at £835,480. The eAsset system and YJMIS annual running costs are £626,764. Examples of the type of assistance which the YJB will be able to provide under the new function are the maintenance and management of IT systems, assisting local authorities in co-commissioning from their case management IT suppliers and helping to procure changes to IT systems.
These are minor changes to the powers, although I bear in mind the noble Lord’s general wariness about any alteration in IT systems, and given his experience he has much to teach a government body. However, I think that he will be able to see that the YJB will be very much on top of this and the data will be sufficiently secure. I hope that he can accept that the YJB will continue to do the useful job that it has been doing so far. I hope that it will be able to do it somewhat better with these increased powers. These are reasonable amendments and the board will be able to fulfil its statutory role to oversee the operation of the youth justice system and continue to make what I think are improvements. Nevertheless, one accepts that there are some difficulties which have proved to be particularly intransigent. The increase in the provision of education, the sharing of information and the capacity to have more powers in relation to grant are important ancillary powers that will enable the board better to fulfil its functions. In those circumstances, I hope that the Committee will agree that these are proportionate and sensible measures.
Olympic Lottery Distribution Fund (Winding Up) Order 2014
Motion to Consider
My Lords, the Olympic Lottery Distribution Fund—the OLDF—was established for the purpose of holding lottery funding for the London 2012 Olympic and Paralympic Games. The sum of £2.175 billion of National Lottery funds was raised for the Olympics out of a total funding package of £9.3 billion. The statutory instrument before us is an order that will wind up and distribute the remaining funds of the OLDF. The order provides for the remaining £69 million to go to the National Lottery Distribution Fund to be distributed in the usual proportions: that is, 40% to the Big Lottery Fund and 20% each to arts, heritage and sport good causes.
Lottery funds contributed hugely to the costs of staging this tremendous and transformative event, and it is right that we are able to give back to the NLDF in order to support good causes throughout the country. This approach will ensure that all the National Lottery distribution bodies benefit from these funds, given that they all were affected by the raising of funds for the Olympics.
While the order before us today is straightforward, it is worth taking a moment to pause, reflect and acknowledge the significant role that lottery funding had in supporting the extraordinary London Olympic and Paralympic Games of 2012. It was a once in a lifetime event which bestowed huge benefits on the whole country beyond the Games themselves. Thus the decision was taken, with cross-party support, to use lottery funds in the belief that the benefits to the country in sport, heritage, culture, tourism and regeneration would be greater than the disbenefits brought by a reduction in funding to other good causes.
The memories of that summer will remain with us for many years, from the feats of the elite athletes in our world-class stadiums to the extraordinary efforts of the thousands of volunteer Games Makers. More than that, the Games have left a lasting legacy: 1.7 million more people are playing sport once a week than when we won the bid in 2005; there are new homes and jobs in east London; there has been an increase in tourist numbers and spending; and there has been a huge boost to investment in the UK and to UK trade overseas. This legacy has been hailed by the IOC as a blueprint for future hosts. It has been an immense success for our whole country, and I believe that the return on this investment, funded in part by lottery money, is immense.
This success cannot be separated from the National Lottery. Indeed, in the recent recognition of the National Lottery’s 20th anniversary, the Olympics were brought up again and again as an example of the extraordinary effect that National Lottery funding can have. The investment from the National Lottery has paid truly exceptional dividends.
Some £79 million was previously given to distributors from the OLDF under regulations in July 2014. This, along with the £69 million remaining in the fund, is over and above the £675 million that will go back to distributors from the sale of land in the Olympic park from the early 2020s onwards. We therefore expect lottery distributors to receive back a total of around £823 million. This represents around 38% of the over £2 billion of lottery funding made available for the Games, in addition to all the extraordinary benefits to the country that I set out earlier.
The funds from the OLDF that are being returned to the NLDF will be put to good use. In anticipation of these funds, the previous Secretary of State for Culture held conversations with lottery distributors in late 2013, leading to a series of announcements of new funding programmes. These include: funding from the Arts Council England to promote the best of arts and culture from the UK to overseas countries; funding from the Heritage Lottery Fund to mark significant anniversaries across the UK; a programme from Sport England to improve the outdoor play areas in school; and many more.
The order dissolves the OLDF, which was set up specifically for the Olympic Games. Through sharing the remaining funds across the distribution bodies in the usual proportions, it also represents the Government’s strong commitment to ensure that good causes are supported fairly and well into the future. I beg to move.
My Lords, I thank the Minister for giving that full introduction to the order. I have no objection in principle to what has been said. I have a couple of points to make and a couple of questions that he might wish to answer, either today or subsequently in writing.
The first is my favourite comment about dates. There is a requirement on all who provide statutory instruments that they be brought in on common commencement dates, which are 6 April and 1 October each year. Why is this instrument not being introduced on a particular CCD? Before the Minister asks for guidance on that, perhaps I may continue a little because I am aware that the statutory instrument states that the order will come into force,
“in accordance with article 1”,
which states that the order will come into force,
“on the day after the day on which it is made”.
The date is not quite right in that sense.
I did not hear the Minister comment on the exchange of correspondence with the Joint Committee on Statutory Instruments. Would he like to do so, given that considerable pressure is placed on the department for failing to observe the rules and regulations relating to this issue? This may seem to be a trivial point, since I think I am right in saying that all that was required was that the statutory instrument should have been labelled in such a form that made it clear that it was one of those to which special consideration applied. I can see puzzled looks behind the noble Lord, so I may have got this completely wrong—but I have the relevant document here, which refers to the Olympic Delivery Authority (Dissolution) Order. I just wanted to check whether I had misunderstood what was being said, so perhaps the Minister can respond on that point. I think the matter is resolved and is not an issue, but it does bear on my point about the date, given that the date is now postponed for 40 days after the passing of the arrangements—which, again, takes us away from 1 October, and indeed 6 April.
More generally, I listened carefully to the story about the £2.175 billion in lottery funding placed at the disposal of the Olympic lottery distribution body. Again, I associate myself with the Minister’s comments about the brilliance of the Games and the way in which the lottery was able to play a key part. We fully accept that without this lottery funding there would have been a very different approach to Games; indeed, they would not have been as good as they were.
However, he was not entirely complete in his comments. The money that the Government were going to contribute through the lottery—or ask the lottery to contribute—was £1.85 billion, but he said that the amount spent was £2.175 billion. I just want to check my recollection of the difference between those figures. I think that I am right in saying that an additional tariff was placed on the normal lottery distributors—the arts, heritage and sports bodies—of £675 million each to top up the figures. That brings us very close to the £2.175 billion that the noble Lord mentioned. Can he confirm that my arithmetic is, if not exactly right, at least close to an approximation of what happened on the ground?
The reason I make that point is that I think the Minister also said that, at the winding up of this fund, there would be some £69 million left available, which technically should be with the OLDF but which is being transferred across to the NLDF—I apologise for the acronyms. That is good, but it is only 10% of the money that would have been going normally to these lottery distributors had the Olympic Games not happened. Perhaps the Minister could reflect on this. Again, I am delighted to see bodies now distributing the additional money for the good purposes which he mentioned in his closing remarks, but it would have been a rather different story had it been the full £675 million. That would have meant rather more being spent on the arts, sport and other matters of good value—but it is only £69 million. That is point one.
Point two is: why is it £69 million? If all the money was to be spent on the Olympic Games, why is there any left over? Was this good management and brilliant expertise in budgeting or was it some sleight of hand that we are not yet being told about? I would be interested to know what the story is here. I think I am right in saying that the Olympic lottery distributor was due to receive any proceeds, or a share of any proceeds, from the facilities that it funded, particularly the Olympic fields at the Queen Elizabeth Olympic Games site. Is that right and is that £69 million the same £69 million that was reported to have been paid back to the OLDF as a result of the sale of the Olympic village? If that is correct, are there any other funds that might be coming around later? Presumably there are still some contributions to come, perhaps from other facilities which have been made available elsewhere.
To the extent to which they are due to provide funding back into the original Olympic distributor, the OLDF, where will that go? Does that go automatically straight to the NLDF? I am sure that there is a straightforward answer to what happens when the fund is wound up, but there is a bit of gap between the £675 million which was pinched, or taken, from the sports, arts heritage and charities funds, and the £69 million which is going back. Is there any more money and, if so, will that help bridge that gap?
I have two final points. First, this was, in a sense, a one-off in that we do not get the Olympic Games very often—and presumably there are lessons to be learnt from that. Is the Minister in a position to comment on whether using lottery funding as we did was the right and appropriate way to fund the Games? Would there be an opportunity to reflect on that at some other point in the cycle? I say this because the precedent set by the Olympic Games could have been, but was not, used for the Commonwealth Games. We are aware that there are a number of other high-profile sporting and other activities coming to the United Kingdom over the next five, 10 or 15 years. Do we have any plans to deal with that, and what are the lessons to be learnt from the operations that were undertaken during the Olympics?
My last point is a slightly wider one, which I am sure the Minister will need to write to me about. I am aware that the payback scheme, which I think—I hope he will confirm this—has resulted in £69 million coming back to the lottery distributors, is based on a system that applied when the Dome was sold after extensive negotiations. Proceeds from that came back through the Homes and Communities Agency to the Big Lottery Fund. I wondered whether there was any more news about what was happening there, because that was to be a continuing process of fundraising. The deal was based, I think, on performance in the O2 arena subsequent to it being sold. Again, is money available, is it coming back and, if so, where is it going? I agree that that is a very complicated question to ask, and much wider than the brief, but I would be very interested in having a response in due course.
My Lords, I thank the noble Lord for a range of questions. I am most grateful to him for saying that if there are any outstanding points at the end, I can write to him with the full details.
As for the date, my understanding is that this is a general rule from which one may derogate for good reason. The purpose of these common commencement dates is to reduce the burden on business by providing just a few days per year on which the law is changed. This order will not in fact have any impact on business, but I will reflect a little more on what he has said and discuss the matter with officials, because clearly it is desirable that things are done correctly and clearly.
There were a number of points on funding. The £2.175 billion is made up of £750 million of lottery-specific games, £410 million of initial lottery funding from the NLDF, £340 million from sport distributors and £675 million of extra funding from the NLDF. Of course, I shall set that all out in the letter I will write to the noble Lord so that it is clear. As to whether any further money is due into the OLDF account, I understand that no further funds are expected, so that is extremely unlikely. If further funds are due once the OLDF is closed, the draft order provides that they will be distributed to the NLDF in the normal proportions.
Another point about funding is that my understanding is that the £69 million is in relation to the sale of the Olympic village, while the £675 million relates to Olympic land sales, which will be returned from the early 2020s. We are not of the view that there will be any more funding. I think I have covered the query about the distinction and the difference between the £69 million and the £675 million, but if necessary after reflecting on Hansard, I will write more fully on that.
As to whether the funding mechanism is working well, there was a general feeling that the lottery funding worked extremely well so far as the outcomes were concerned. It was acknowledged that there would be disbenefits in one sense, but the organisers and the Administration at the time—I think this was on a cross-party basis—took the view that this was of considerable national importance and, indeed, that the benefits went way beyond the Olympics into regeneration. There was a conscious understanding of and belief in that, which is one of the reasons why there was a determination to return as much money as possible, while recognising that there were probably causes which did not receive funds. It was felt that it was in the national interest and that the opportunities it provided for the nation outweighed those disbenefits. I think I said that there was a feeling of a national dividend that came forward on a range of scales.
Obviously, no one knows when there may be an opportunity for the country to host the Olympics or something of that standing again, but I am sure and would expect that whoever has the responsibility for that would reflect on how the money is raised and whether there is good custodianship. I think that there is a strong feeling that the money was well marshalled and spent, but clearly if there are national events using National Lottery Fund and, indeed, taxpayers’ money, there will need to be a very strong reflection on those experiences.
On the issue of the payback scheme, I am grateful to the noble Lord for having described it as “intricate” or “complicated”. I think that I might find it too complicated to get through this afternoon, and do not in any way want to mislead the noble Lord, so I would be most grateful if I could write to him on all the points that he raised. In the mean time, I commend the order to the Committee.
Health: Neurofibromatosis Type 1
Question for Short Debate
My Lords, I am delighted to open this debate on the provision of services for people with NF1. I am very grateful to my noble friend Lord Bassam for alerting me to the issue and, indeed, for speaking in our debate today.
Essentially, I am concerned at the lack of a cohesive strategy within the NHS for dealing with this condition, particularly with problems of early diagnosis and lack of support for sufferers and their families. NF1 and NF2 are a group of genetic conditions that predispose people to the development of tumours of the nervous system. NF1 is one of the commonest genetic disorders. NF2 is much less common, with only around 800 people affected in England at any one time. The care of all NF2 patients is nationally commissioned through four specialist centres. However, NF1, although more common, is far from being a household name.
The diseases involve the skin and nervous system predominantly. People with NF1 have an increased risk of developing a specific NF-related cancer. The rare physical complications can affect most of the body’s systems. This can evidence itself in physical difficulties and deformities. At least 80% of people with NF1 also have learning, educational, psychological, communication and behavioural difficulties. A recent UK study published in the Journal of Pediatrics showed a high prevalence, 25%, of autism spectrum disorder in NF1 patients and confirmed the findings of previous studies that 50% of NF1 children have attention deficit hyperactivity disorder, yet only 3% of the children in the study had actually been diagnosed with either condition. According to the Department of Health, it is estimated that there are more than 11,000 individuals with NF1 in England. However, research published in 2010 by the excellent Manchester Centre for Genomic Medicine suggests that there could be more than 18,000 people with NF1 in England.
One of the problems is that the care of NF1 patients does not fall within the remit of one particular medical specialty, and therefore care is frequently disparate and fragmented. NF1 has little profile compared to other conditions, and this is as true of clinicians as of the general public. In a recent Written Answer, the noble Earl said that there were currently no plans for raising awareness activity in relation to NF1. Instead, he referred to the NHS Choices website for information. This is not sufficient. Fifty per cent of people with NF1 are the first in their families to have the condition due to a new genetic mutation. In these cases, early diagnosis is a particular problem. Indeed, an opportunity for early diagnosis is often missed by health professionals as they may lack an understanding of the condition. Many parents face a wall of ignorance from their GPs and have to fight for appropriate referrals and sometimes go privately. We know of cases where parents have been threatened with having their children taken into care because a health professional has taken marks on the skin or fractures through abnormal leg bones as evidence of child abuse. Some patients have rare complications that can cause significant morbidity and are frequently life threatening. They need access and long-term monitoring by specialist teams to allow widespread access to specialist care.
Since 1990, excellent clinical services have been developed by the neurology department at Guy’s and St Thomas’, and the Manchester centre that I have already mentioned. At any one time, these two centres have approximately 500 patients with complex NF1 under their care. However, the majority of people with NF1 are reliant on services up and down the country, which are often fragmented, and many areas lack specialist clinics. Although both specialist centres work closely with the national charity, the Neuro Foundation, much more needs to be done to get an integrated approach across the NHS. One huge asset is the small but invaluable network of specialist advisers variously funded by the NHS and the Neuro Foundation. The value of the network is demonstrated every day. The unique and specialised work of the advisers with individuals, families, health professionals, schools and other voluntary organisations is highly valued. Working from a base within an NHS trust, and with strong links to the regional genetics centres, they link with the many other professionals involved in the care of anyone with NF1. There are only six advisers in England, three of whom are part-time. They are very hard pressed and cannot cover the whole country.
One solution to the problem of misdiagnosis would be to use the personal child health record—the red book—which is a national standard health and development record given to parents at a child’s birth. The parents retain the red book, and health professionals should update the record each time the child is seen in a healthcare setting. It comes under the auspices of the RCPH. I very much hope that it will consider adding checks relating to birth marks to the content of the record. Will the Minister lend his support to that?
I mentioned earlier the lack of educational attainment by young people with NF1. The commonest undiagnosed problems found in children seen in the two specialist clinics are undiagnosed learning and behaviour problems. I have heard of cases where statementing took place only towards the end of a student’s career in school. We must put this right. It is also vital that the DWP looks closely at the support available for people with NF1 in their efforts to enter the world of work. The recent changes in unemployment benefits have caused many people with NF1 considerable distress. I am also aware of people being unsuccessful because their facial appearance is different.
I am also alarmed at the lack of opportunities for young people with NF1 to get together and socialise. They are often left isolated. When they get together, they realise that they are not on their own and other young people suffer from the same issue. The same often goes for their parents. For the past two years, through hard work in fundraising by two mothers, a small number of children have attended a week-long NF1 camp. In Scotland, the charity Funny Lumps now runs regular get-togethers for NF1 children and their families. However, all children with NF1 should have these opportunities.
In the UK, we have two fantastic specialist centres—Manchester, and Guy’s and St Thomas’—which have made major contributions in NF2, learning and behaviour in NF1 and early diagnosis of sarcoma in NF1. Yet more is needed to fund UK treatment trials and to look at cost-effective models of care and social support for people with NF1.
In conclusion, will the noble Earl consider how the Government could recognise that more needs to be done to help people with NF1? Is he prepared to meet the Neuro Foundation to discuss these matters further? Will he support the red book embracing NF1? Will he support efforts to employ more specialist advisers? I have been advised that ideally we need 20 throughout the UK. Clearly, we need a partnership between the Department of Health, NHS England, specialist centres and the Neuro Foundation. Can he assure me that funding for the specialist centres for complex NF1 and NF2 conditions will be maintained? Will the Government encourage efforts to enable young people with NF1 to come together for socialising and activities? Will he talk to colleagues in the Department for Education to get early access to statementing for children? It is vital that NF1 is included on the list of progressive conditions as far as the DWP is concerned. Will the Minister be prepared to liaise with the DWP on this? Finally, can the national research strategy be amended to ensure that there is sufficient research into the treatment and causes of NF1?
I end by paying tribute to the specialist doctors, nurses and other clinicians who play such a critical role in providing help to patients affected by this condition. I pay tribute to the Neuro Foundation and Funny Lumps, which are very small charities indeed, consist of dedicated volunteers and are backed by a small number of part-time very hard-working staff who champion the cause of people with NF1 and NF2. I also pay tribute to the parents and carers of those with this condition who are utterly dedicated to supporting their children. Most importantly, people with NF1 deserve better.
My Lords, I promised recently when I spoke in a debate on House procedures that I would not, as Labour Chief Whip, make a habit of speaking, so I owe noble Lords an apology for this reappearance so soon. I am looking over there at “The Judgment of Daniel” with a finger pointing in my direction and I am becoming worried.
However, I make no apology for speaking out on this issue and I am sad, if unsurprised, that the debate has attracted so few here today, although this rather makes a point. Few people know of the neurofibromatosis type 1 condition and, I suspect, even fewer know of its debilitating effect on individuals with the condition and on their families. I confess that I was largely unaware of the condition and its impact until early last year when I, by chance, read an article reviewing the film “Under the Skin”, starring Scarlett Johansson and a young NF1 sufferer, Adam Pearson, who plays a major role in that film. Shortly after watching it, I met Nicole Martin, who has NF1, and her mother Vanessa. Talking to them, I learnt more about the condition and the issues it gives rise to. I decided that Nicole and Vanessa were heroes for the way in which they had tried to raise awareness of NF1. It was then that my noble friend Lord Hunt, to whom I am extraordinarily grateful for calling this debate, and I decided to try to help in their work.
NF1 is the least known but most common genetic condition. It is estimated that across Britain there are some 25,000 sufferers who can be identified at birth, but for whom there is no cure. One NF1 child is born every day, and one in 2,500 children is born with the condition. Each has a 50% chance of passing it on to each of their own children.
The problem with the lack of awareness is that it leads to a lack of understanding from health, education and public service professionals—the very people who need to know how to respond to those needing help and support. Vanessa Martin explained to me that, while the signs were present from birth, diagnosis was not made until Nicole was three years old. In another case, a Reading parent, Nicky Clifford, told me that her son was not diagnosed until he was eight. By that age, most of the disadvantages that my noble friend referred to and NF1 sufferers confront have already become entrenched. However, many more people are not diagnosed until they are in their 30s or become parents themselves, having unwittingly passed the condition on. At that point, parent and child are often diagnosed at the same time.
NF1 manifests itself in different ways. Basically, tumours grow on the nerves inside the body and on the skin. This leads to severe disability, constant pain, itching, cancers, epilepsy, high blood pressure, bone abnormalities, speech and language problems, dyspraxia, learning and behavioural difficulties, and mental health issues. The condition is also unpredictable—it mutates and changes all the time. Just this morning, I heard that over the past weekend a number of new and painful tumours had grown quickly on Nicky Clifford’s son’s head. His mother of course is now desperate to get an emergency appointment with a paediatrician and an MRI referral.
In the case of Nicole Martin, now 17, she has done remarkable things with her life. Until quite recently, Nicole had hoped to represent the UK in judo at the Special Olympics and, despite lengthy periods of hospitalisation, is doing astoundingly well at her sixth-form college and plans to go on to higher education.
But why is she doing so well? It is largely because both she and her mother are very determined people. Nicole was referred to a specialist NF1 centre in Manchester, to which my noble friend referred. This led to a further referral to Oxford and the removal of tumours. She has now moved from facing the prospect of a life in a wheelchair and living with adaptations to walking unaided and with lower levels of pain relief and management. Now she is looking forward to obtaining a degree and seeking employment—something everybody aspires to for their children.
Nicole’s story is indeed inspiring. However, it has been a constant struggle, and the lessons of that struggle seem clear to me. We need to raise awareness in the medical profession to ensure early diagnosis. The café-au-lait, or CAL, examination at birth should be standard and a record made of that test. A follow-up procedure should be put in place and referrals made when and where appropriate. Further CAL checks need to be made throughout a child’s early years. As I understand it, there is currently no such imperative for any recording. The training of medical staff obviously needs to be part of the approach, so that following early diagnosis, support and referrals can be put in place.
I hope that the Minister can this evening confirm that a national strategy is being developed to assist NF1 sufferers. Other specialist conditions such as cystic fibrosis, with approximately 10,000 sufferers in the UK, and motor neurone disease, with around 5,000 people affected at any one time, seem to attract more interest in terms of research, support, specialist advice and training development. I do not think it right to argue one condition against the needs of another, but what the National Health Service might need to do is ensure that conditions that are not widely understood are part of a broader strategy so that sufferers and their families do not feel ignored or left out of care planning.
As very determined parents of NF1 sufferers, Nicky Clifford and Vanessa Martin have usefully found advocates in Vicky Groulef, in Reading, and Sarah Owen, in Hastings and Rye. In itself that is good, but this condition and others should not have to rely on the caring interest of aspiring parliamentarians, which is what they are.
Finally, I make a plea to the Minister. He will be pleased that I am asking not for the release of new or additional resources but for a review of how support is given by the NHS to the organisations that help parents and sufferers of this common but little-recognised condition. This will enable us to be assured that the vital networks that are there to help are properly and effectively nurtured and that the treatment, care and compassion that the NHS is renowned for are unlocked.
My Lords, I congratulate the noble Lord, Lord Hunt, on securing this debate and thank him for his obviously heartfelt interest and commitment in this area. I also greatly appreciated the contribution from the noble Lord, Lord Bassam, which was very moving.
The noble Lord, Lord Hunt, described these conditions very clearly. Like so many uncommon disorders, those affected by neurofibromatosis can face a regime of constant condition management, hospital visits and treatments for them to have the quality of life that the rest of us take for granted. However, like the vast majority of people who have to deal with all the problems that such conditions can bring, those with neurofibromatosis respond with bravery and resilience that can only be admired.
At this point, I want to pay tribute to the vital role played by the Neuro Foundation and the excellent work it undertakes to help improve the lives of those affected by neurofibromatosis through the information, advisory, advocacy and other services that it provides. As well as this support and guidance, clearly there is a need for professional help for people with neurofibromatosis, who require the best services the NHS can provide. That is why we continue to invest in and improve our services.
As we have already heard, neurofibromatosis, or NF, is a genetic condition mainly affecting the nervous system and skin and causing the formation of tumours, which in some cases can be malignant. Neurofibromatosis type 1, NF1, is the most common form, with a birth incidence of one in 3,000. The number of people with the condition in England is estimated, as the noble Lord, Lord Hunt, told us, at 11,267. That is a significant number. Furthermore, around 10% of people with NF1 will be affected at some time in their life by a cancer known as malignant peripheral nerve sheath tumours. This is one of the most serious problems that can affect a person with NF1 and requires specialist care and treatment. Government-funded research has included a study to improve the diagnosis of this type of tumour using positron emission tomography—computerised tomography. Both the National Institute for Health Research and the Medical Research Council welcome funding applications for research into any aspect of human health, including neurofibromatosis.
In terms of diagnosis and the care pathway, NF1 is a condition which people are born with. Usually a diagnosis can be confirmed or excluded in early childhood, with most cases of NF1 confirmed through clinical examination and the identification of characteristic symptoms. If, at a young age, there are few or no signs, clinical diagnosis may take longer, but generally clinicians can be confident clinically whether or not a child has NF1 by the age of five years. The suggestion that there may be a way to use the red book in monitoring NF1 or other rare diseases should be considered further.
Undoubtedly, as I am sure noble Lords would agree, all those with the condition, particularly those with a complex form, need and deserve access to high-quality, multidisciplinary care. Since 1 April 2013, NHS England has been responsible for specialised commissioning. Last year, it created a task force which aims to improve ways of working and to ensure that specialised commissioning is undertaken in the most efficient and effective way possible. This work is being carried out with input from key stakeholders. I am sure that we can all agree that it is only right that NHS England keeps all its services under review to ensure that they are fit for purpose. We will need to await the outcome of any review before we can comment on any changes to services. NHS England remains responsible for securing high-quality care for all patients with complex NF1. NHS England’s service specification clearly sets out what needs to be in place for providers to offer evidence-based, safe and effective care, ensuring equity of access to a nationally consistent, high-quality service. As mentioned, we should applaud the excellent work carried out at Central Manchester University Hospitals NHS Foundation Trust and at Guy’s and St Thomas’. The complex NF1 service is accessible by all patients with a suspected or confirmed diagnosis of NF1, subject to an appropriate referral. Patients identified by the service as having non-complex NF1 will have their care transferred to the appropriate local team, as required.
It is worth noting where there have been positive developments in services in recent years. These include: a noticeable increase in the awareness of NF1 through better training of doctors and nurses, particularly through community paediatricians; the development of links between expert centres and local hospitals, and improved transfer of complex patients to centres; and a greater understanding of the disease and the targeting of treatments towards particular clinical problems. The commissioning and consequent funding of these services is relevant at all levels of care, including specialised, secondary and primary care, and there are generally good support systems in place, so we have made recent progress. Clearly, however, more needs to be done, and we all want to see continued improvements in healthcare services for all types of patients.
As part of the implementation of the UK strategy for rare diseases, the Government committed to raising awareness about rare diseases and empowering patients. The Department of Health is currently working with its partners to produce two videos about rare diseases, one focusing on healthcare professionals, particularly GPs, as the first point of NHS contact, and the other providing information for patients and parents about rare diseases.
The noble Lord, Lord Hunt, raised the issue of support for the young in education and finding a job. Obviously, we must support all people to attain their full potential, irrespective of what illnesses or conditions they may have. However, as he will appreciate, assessments of what type and level of support is needed must be made on a case-by-case basis and at a local level. For example, there are clear guidelines for the application of special educational need that take account of many factors. All children with a recognised need are assessed for SEN support, taking into account additional factors such as physical and mental health.
Clearly, there is much work ahead, and debates like this remind us that there are patients out there who rightly demand—and deserve—the best from their NHS. We all support the need to help those who might struggle to build a social life due to the difficulties which their condition presents. We would be interested to hear more about the kind of initiatives which the noble Lord, Lord Hunt, mentioned and would suggest that all avenues of possible funding should be explored by charities and others to put in place programmes that can respond to this need.
The noble Lord, Lord Hunt, referred to the difficulty, in many cases, of achieving a diagnosis. A diagnostic odyssey is not something that any of us would wish on any patient. We are aware of this issue. We are starting to address it and have commissioned early research to get a better idea of the scale of the problem. Part of the answer is raising awareness among healthcare professionals. We are working on this and it will be bolstered, undoubtedly, by the establishment of genomic medicine centres as part of the 100,000 whole genome project.
The noble Lord, Lord Bassam, referred to the difficulty of familial diagnosis of these conditions. It is true that it is a difficult issue, especially as NF1 can be a mutation in the individual, so seeing a family history is often not possible. I mentioned the research that was currently being funded by the NIHR. The chief investigator for the study is Professor Rosalie Ferner, who is also lead for the national NF1 service. Professor Ferner aims to include data from the study in a paper, which is a work in progress at the moment, on long-term follow-up in people with NF1; we await that with interest. Other studies are going on, including an evaluation of the clinical phenotype of malignant peripheral nerve sheath tumours; international prospective clinical evaluation of optic pathway gliomas in NF1, including reasons for commencing treatment and visual and radiology outcomes; the evaluation of migraine in NF1; the development of a disease-focused patient quality-of-life outcome measure for NF1 adults; and other work besides.
We have delivered and will continue to deliver improvements in services for all patients, including those with a rare condition such as neurofibromatosis. I believe that steps are being taken that will lead to a measurable difference to the lives of all those with a rare disease. However, as I have said, we cannot rest on our laurels; more needs to be done. I have no doubt that this debate will continue in one form or another outside this Room. The debate that we have had today has undoubtedly been helpful in promoting a wider discussion on these issues. In the mean time, I thank the noble Lords, Lord Hunt and Lord Bassam, for all that they have said in support of those with this devastating condition and for their invaluable contributions.
Committee adjourned at 5.24 pm.