Queen’s Speech

Baroness Chisholm of Owlpen Excerpts

Tuesday 22nd October 2019 Lords Chamber

[Baroness Howe of Idlicote (CB)]

My Lords, like the noble Lord, Lord McNally, I too have found myself having to change what I had intended to say today, following an announcement by the Secretary of State for the Department for Digital, Culture, Media and Sport last week that the Government no longer intend to implement Part 3 of the Digital Economy Act 2017. The profundity of this announcement and its political implications for the Government have not yet made their presence felt, for the simple reason that the announcement was made, probably on purpose, in the epicentre of the Brexit storm. The simple political reality, however, that the Government cannot escape, and the consequences of which they cannot circumvent, is that the 2015 Conservative manifesto stated, on page 35, that,

“we will stop children’s exposure to harmful sexualised content online, by requiring age verification for access to all sites containing pornographic material”.

That was a simple, profound, high-profile manifesto commitment that brought hope to parents up and down the country and to children’s charities. You simply cannot make this kind of commitment, introduce the legislation, appoint a regulator, ask the industry to prepare for the law change and then suddenly make a U-turn and not expect serious political consequences.

The Government may have to face an election, and therefore they may want to think again too. The actions of the Secretary of State suggest that even seminal Conservative manifesto commitments cannot be trusted, so I gently ask the Minister why anyone should believe what they say after some of the events of last week. How will we know that key commitments will not subsequently be swept away because the Government claim to have better plans?

On the subject of better plans, one of my difficulties is that the Government have not really said what these better plans are, other than that they will find expression in the context of their work on online harms, further to the White Paper. This is particularly problematic because, although I have spoken to children’s charities and parents, no one has been able to tell me of a better way to prevent children accessing pornographic websites than through the introduction of statutory age verification enforced by a regulator IP blocking non-compliant sites. Moreover, no one can imagine a more efficient way of facilitating children’s access to pornographic content online from the day that statutory age verification would have come in than abandoning this commitment so that it does not come into force.

Hopes had been expressed that the online harms White Paper process might extend that protection to social media but, let us be clear, nothing can take the place of statutory age verification in relation to pornographic websites. The best way to deal with pornographic websites is not necessarily the best way to deal with pornography on social media platforms, yet the Government seem to be using a rather crude one-size-fits-all logic to justify not introducing the most effective mechanism for protecting children from pornographic websites, in favour of some vague commitment to an undefined mechanism that can address everything. All this is simply not credible. In the world of online safety, there are no one-size-fits-all solutions. I am pleased, of course, that the Government want to do more to prevent children accessing pornography through social media platforms, but they should not use this as an excuse to justify jettisoning the most effective and efficacious way of protecting children from pornographic websites—statutory age verification—especially having made it a manifesto commitment.

I wonder whether whoever came up with this idea actually reminded the Prime Minister that they were recommending that the Conservative Party renege on a headline manifesto commitment—better, surely, to have never made that promise than to make it, introduce the legislation, prepare industry and then change their mind.

I also think the Government should think very carefully about how it looks to have people vote for a manifesto containing a simple, clear commitment to introduce statutory age verification and to then subsequently go back to them and say, “We know you voted for this but now we have a better idea”. In the context of Brexit, where they are saying that the political class should take care to respect how people have voted and not come back and tell them that they know better, they should apply the same logic to themselves.

The other consideration in all this which should not be overlooked is Britain’s influence in the world. The Government were leading the way in this space and multiple jurisdictions were watching with the greatest interest, including within the EU. If the Government recover their nerve, Britain will still have the opportunity to play a key role in setting global standards on statutory age verification. It seems bizarre that we should invest millions in developing world-leading legislation and technology and then, through an apparent loss of nerve—and with no moral compass as far as honouring manifesto commitments is concerned—turn our backs on a great opportunity for Britain to help protect children, not just in the UK but across the world. I very strongly suggest that if the Government do not want to alienate parents up and down the country, they should rapidly reconsider their strategy and lay the BBFC age verification guidance before Parliament as soon as possible.

[Baroness Chisholm of Owlpen (Con)]

My Lords, please let us try to keep to six minutes; otherwise, when we come to the wind-up speeches, they will be galloping, rather than being able to give noble Lords the answers they want.

Mental Health: Weight and Shape-related Bullying

Baroness Chisholm of Owlpen Excerpts

Monday 22nd July 2019 Lords Chamber

[Baroness Blackwood of North Oxford]

The noble Baroness is right that children exposed to persistent bullying risk experiencing these problems. This is related to the experience of face-to-face bullying, but exposure on social media can also cause the problem. That is why the Department for Education is providing over £2.8 million of funding between September 2016 and 2020 to four anti-bullying organisations—Internet Matters, the Diana Award, Anti-Bullying Alliance and the Anne Frank Trust—to support schools to tackle bullying. Of course, all schools must have in place an anti-bullying policy, which Ofsted regulates.

[Baroness Chisholm of Owlpen (Con)]

My Lords, we have already heard from noble Lords how important this problem is, but of course it is partly the responsibility of the Department of Health. I ask my noble friend whether we are also talking cross-departmentally. Surely schools have a role to play here, so are teachers being taught about the problems this can bring? Is DCMS being taught about online bullying, et cetera?

[Baroness Blackwood of North Oxford]

My noble friend is quite right. As I have already pointed out, DfE-funded anti-bullying work is ongoing. Work is also increasing to join up the provision for young people through the children and young people Green Paper, which will put in place early intervention provision to make sure that young people do not have to wait until they are ill before they can get support. This problem needs to be challenged right across government, which is why we have also brought in the online harms White Paper to make sure that social media companies play their part.

NHS Long-term Plan

Baroness Chisholm of Owlpen Excerpts

Monday 1st July 2019 Lords Chamber

[Baroness Blackwood of North Oxford]

The noble Lord raises two hugely significant issues, which probably deserve a full debate. On clinicians and NHS systems being prepared to respond most effectively to those facing terminal illness, and their families, we have improved but there is much more to do—not just for the health service but for us all as a society. We need to become more open and comfortable with discussing that; some work has been done but more is needed. On mental health services providing support for families as well as individuals, we are still some way from where we would like to be but it is recognised as something that needs to be done.

[Baroness Chisholm of Owlpen (Con)]

My Lords, I want to ask my noble friend the Minister about GPs’ training in mental health. I think it has been acknowledged that when parents take their children to the GP, quite often that is for a physical ailment but it turns out that the child could have a mental problem. It is difficult for GPs to pick that up, perhaps partly because of a lack of training and partly because they have only 10 minutes to see the child.

[Baroness Blackwood of North Oxford]

My noble friend raises a hugely important issue. We are seeing an improvement in the quality of training for GPs; the RCGP has been playing an important role in this, especially in raising specialist areas such as perinatal mental healthcare through the champions that it spreads through its system. We are seeing the impact on the ground, with CCGs meeting the mental health investment standard and rolling out specific access waiting times, so it is having an impact. But there is always more to do and the royal colleges have a specific role to play in raising awareness and the quality of training.

Healthcare (International Arrangements) Bill

Baroness Chisholm of Owlpen Excerpts

Report stage (Hansard): House of Lords
Tuesday 12th March 2019 Lords Chamber

[Baroness Jolly (LD)]

My Lords, I too support the amendments in the names of the noble Baroness, Lady Thornton, and my noble friend Lord Marks. I repeat the view that he and the noble and learned Lord, Lord Judge, expressed: we should be producing only legislation resulting from the decision to leave the EU. I thank the Minister very much for meeting us and for the government amendments—particularly to those Henry VIII clauses, which have absolutely no part in modern legislation.

I agree with previous noble Lords, but any Bill dealing with healthcare agreements outside the EU is different. I would be happy to look at these issues in another Bill at another time. As has just been said, the expansion in scope of the Bill looks opportunistic and is completely inappropriate at the moment.

[Baroness Chisholm of Owlpen (Con)]

My Lords, I cannot agree with these amendments. As we pointed out during the progression of the Bill, we live in a global world, with more people travelling internationally for all kinds of reasons. There is obviously a huge demand for healthcare systems between countries, giving the traveller peace of mind that the foreign country they are in can respond to healthcare needs.

As was also mentioned, we already have simple reciprocal agreements with non-EU countries. The domestic implications are limited, and our current powers to charge domestic overseas visitors, and the regulations under such powers, provide for domestic implementation. Importantly—

[Lord Foulkes of Cumnock]

May I interrupt the noble Baroness?

--- Later in debate ---

[Baroness Chisholm of Owlpen]

No, let me finish. The Bill will not replace or limit the prerogative power to enter into international healthcare agreements. My understanding is that agreements will still be subject to appropriate parliamentary scrutiny.

It is surely right for us to take advantage of the Bill and look at the opportunities it can offer us. We are not trying to shoehorn something dastardly into it. It could offer all kinds of things. It seems to me that planning ahead is a refreshing thing to do. Many of the arguments raised have nothing to do with protecting or giving peace of mind to travellers. As a nurse, my main priority will always be those needing care. The Bill allows them reciprocal healthcare outside the EU and just that. Should there be a Division, I hope that noble Lords will keep in mind those people who, under the Bill, will be able to travel globally with renewed peace of mind about their healthcare.

[Lord Ribeiro (Con)]

My Lords, this is an enabling Bill and no more. In a letter to the chairman of the Delegated Powers and Regulatory Reform Committee on 8 March, the Minister confirmed that these powers would be used only in the exceptional circumstances of EU exit. We will discover the outcome of that tonight.

In these circumstances, the regulations’ implementing powers would be subject to parliamentary scrutiny. The assurances and clear message from our debates in Committee—when the Minister was very clear, in answer to a question from the noble Lord, Lord Brooke of Alverthorpe, that reciprocal healthcare arrangements with the United States would present significant challenges because of the different payment systems and such an arrangement was unlikely—should surely be enough to satisfy those who believe that the Government still have a cunning plan to sell the NHS to Donald Trump and others.

As I said in Committee, I believe that the implementation of our international arrangements should be phased, giving priority to our overseas territories, as has been noted; our Commonwealth partners, of which Australia and New Zealand have already been mentioned; and our important international partners, perhaps excluding Venezuela and the Galapagos Islands from that list, as suggested by the noble and learned Lord, Lord Judge.

Anything enabling this to happen should be considered seriously, given the risks of what I believe is likely to be a no-deal Brexit. I do not support these amendments and I hope that the Minister will be able to come up with suggestions for how this can be implemented to overcome some of the concerns expressed from the other side.

Mental Health: Eating Disorders

Baroness Chisholm of Owlpen Excerpts

Monday 25th February 2019 Lords Chamber

[Baroness Blackwood of North Oxford]

The noble Baroness is exactly right. NICE clinical guidance is clear that people should not be rejected for treatment solely on the grounds of their weight or body mass index. This is an issue that Hope Virgo in particular has campaigned on very effectively to improve awareness of treatment of eating disorders. She has discussed her campaign with NHS England and the department, and I am pleased to confirm that my ministerial colleague Jackie Doyle-Price will meet her in the coming weeks to see what more can be done.

[Baroness Chisholm of Owlpen (Con)]

My Lords, I ask my noble friend the Minister to remember young boys and men when thinking about future policies and treatment. They are often forgotten, and I think we are seeing quite a rise in men and boys with this problem.

[Baroness Blackwood of North Oxford]

I thank my noble friend for that question and in particular for raising the issue of stigma. We have put £150 million and extended over 70 services into the community specifically so that services can be more accessible to young girls and boys and so that people can feel free to come forward and seek help where they need it.

Human Fertilisation and Embryology: Frozen Eggs Storage

Baroness Chisholm of Owlpen Excerpts

Wednesday 20th February 2019 Lords Chamber

[Baroness Blackwood of North Oxford]

The noble Baroness is right: the 2009 regulations were not just concerned with fertility options for people who are already adults. The 55-year limit is intended for those who become infertile through serious illness or side-effects, which can happen in childhood. I understand the concerns about the 10-year limit—there was no consensus during the 2009 review—but it is being continually reviewed and will remain under review by the department.

[Baroness Chisholm of Owlpen (Con)]

Can my noble friend the Minister say what the Department of Health and Social Care is doing to publicise the fact that it is preferable for women under the age of 35 to harvest their eggs, because after that age the effect is not as good? I realise that some women do not have a choice, but some private firms take a lot of money from women as they get older without telling them of the disappointments they might face.

[Baroness Blackwood of North Oxford]

My noble friend makes an important point about the success rate of fertility treatment through the freezing of eggs, which is roughly comparable with IVF at 26%. It is important that false hopes are not raised and that women are not exploited in these very sensitive situations.

Health and Social Care (National Data Guardian) Bill

Baroness Chisholm of Owlpen Excerpts

3rd reading (Hansard): House of Lords
Wednesday 12th December 2018 Lords Chamber

Moved by

[Baroness Chisholm of Owlpen]

That the Bill do now pass.

[Baroness Chisholm of Owlpen (Con)]

My Lords, in moving that the Bill do now pass, I express my gratitude to all noble Lords for their interest in the Bill. I want particularly to thank the noble Baronesses, Lady Thornton, Lady Walmsley and Lady Kidron, and the noble Lords, Lord Patel and Lord Knight of Weymouth. Extended thanks must also go to my honourable friends in the other place, Jo Churchill, who introduced this Bill, and Peter Bone, its recent sponsor. My life was made a great deal easier during the passage of the Bill by the excellent work of the Bill team, and the continual assistance of the Minister, my noble friend Lord O’Shaughnessy, along with that of the Department of Health and Social Care. Before I sit down, I must also mention and thank the current National Data Guardian, Dame Fiona Caldicott, who has contributed so much to work in this area. I beg to move.

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord O’Shaughnessy) (Con)]

My Lords, I join my noble friend briefly in congratulating all those involved in the passage of the Bill. I also extend my thanks to her for her sterling work in raising this issue. The Government strongly support the passage of this Bill and we hope it will achieve Royal Assent swiftly. With the permission of the House, I need to clarify an important point raised at Second Reading on demographic data. I have laid a letter on this subject before the House as a more extended account.

The role of the National Data Guardian is, first and foremost, about good practice in supporting organisations and individuals who process health and adult social care data. The Bill is drafted widely to allow the NDG to issue guidance about the processing of health and adult social care data. This should be interpreted broadly and would allow for the NDG to produce guidance on issues that impact on the processing of health and adult social care data. This would include, for example, good practice in security standards for storing health and adult social care data. This is an example of where guidance is not strictly focussed on health and social data itself, but about the processes and issues that could impact it. Almost anything that should be taken into account when processing health and adult social care data—or which broadly has the potential to impact, affect or influence that processing—would fall within the scope of that definition. With that clarification, I hope we will be able to move forward and that noble Lords will support this Bill. I once again thank my noble friend and congratulate her on her sterling effort.

Organ Donation (Deemed Consent) Bill

Baroness Chisholm of Owlpen Excerpts

2nd reading (Hansard): House of Lords
Friday 23rd November 2018 Lords Chamber

[Baroness Chisholm of Owlpen (Con)]

My Lords, I am delighted to support this Bill and thank the noble Lord, Lord Hunt, for bringing it before us today. Its importance cannot be overestimated. It is a good and—thank goodness—simple Bill, and it will save lives. As the noble Baroness, Lady Crawley, and the noble Lord, Lord Patel, mentioned, there are encouraging signs of donors coming forward, but the statistics are still depressing and distressing. As we have heard, Wales already has a presumed consent or opt-out system, and Scotland intends to follow suit. As the noble Baroness, Lady Crawley, mentioned, research has shown that 82% support organ donation, and the public consultation showed unprecedented support, yet we know that only 37% are on the organ donor register.

This simple but effective Bill has the support of doctors and health campaigners. It will not, on its own, solve the problem of getting more donors on the register, but it will enable us to move forward and launch an awareness campaign. I am sure all noble Lords remember the huge publicity around the early transplants, when the successful recipients were household names, seen on TV and interviewed in newspapers and magazines due to the rarity of the procedure. Thank goodness that is not the case today and transplants are now an everyday occurrence, but that headline news was an incentive for people to come forward as donors. The general public are, on the whole, unaware of how important it is for donors to register. Most do not register unless they are personally affected.

Therefore, to be as effective as we hope it will be, this Bill depends on the awareness campaign around it. As the noble Lord, Lord Hunt, mentioned, there needs to be a cultural change. I think I am right in saying that, at present, family refusal rates in the UK are considerably higher than in many parts of mainland Europe. There needs to be education in schools, colleges and universities; an awareness campaign on the radio and TV, in newspapers, magazines and social media; a campaign on lives saved, with examples from donors and recipients; and, perhaps most importantly, a campaign to encourage families to have the conversation. As the noble Lord, Lord Hunt, mentioned, letting the relatives know the organ donor’s decision will make it much easier for them to be supportive at a time of immeasurable grief. I still remember vividly how difficult it was, when I was nursing, to have this conversation with relatives and loved ones, who more often than not were unaware of a donor’s wishes.

This Bill does not change families’ rights. They will continue to be included and will not be overruled; it will not close families out. But the way in which the possibility of donation is presented can have a critical impact on the decision that relatives and loved ones make. Timing, language and the right healthcare professionals are all important factors, and I was pleased to see confirmation in a letter from my noble friend the Minister that there will be specialist nurses for organ donation and a key focus on training to enhance skills in supporting grieving families. It is also vital that those who opt out and relatives who do not give consent feel no shame, and that we respect their decisions.

This Bill is a no-brainer, as far as I am concerned. With the right campaign, it will become apparent that this is not a forced choice and that organ donation is still a gift, perhaps one of the greatest gifts that can be given from one human being to another. One donor can help many recipients. The donor process benefits not only recipients, but also the families of donors and recipients. Recipients’ families have the joy of having their loved ones returned to health, while donors’ families find meaning and gain peace from knowing that lives have been saved as a result of the unfortunate death of their loved ones.

Once again, I thank the noble Lord, Lord Hunt, for bringing this important Bill to our attention, and I am grateful for all the clear explanations of it from both the noble Lord and the Minister, my noble friend Lord O’Shaughnessy. I am delighted that the Government fully support it. Let us now get on with it and get the Bill through Parliament.

Health and Social Care (National Data Guardian) Bill

Baroness Chisholm of Owlpen Excerpts

2nd reading (Hansard): House of Lords
Friday 26th October 2018 Lords Chamber

Moved by

[Baroness Chisholm of Owlpen]

That the Bill be now read a second time

[Baroness Chisholm of Owlpen (Con)]

My Lords, the Bill will place the National Data Guardian on a statutory footing and will promote the provision of advice and guidance on the processing of health and social care data in England. It is an honour for me to bring the Bill before your Lordships today.

The Bill is an important step in increasing the public’s and patients’ confidence in the use and appropriate sharing of health and care data. It has gone through the necessary stages in the other place and I extend my thanks to the many people who have helped prepare the Bill, in particular to Jo Churchill for her dedication to the original Private Member’s Bill and to Peter Bone for sponsoring the Bill in the other place and ensuring that it reached this stage. It would be remiss of me to proceed without mentioning and thanking the National Data Guardian, Dame Fiona Caldicott, who has contributed so much to this area. I am grateful to the Parliamentary Under-Secretary of State for coming to listen to the debate. I appreciate the department’s help with the progress we have made so far and the cross-party support for the principle behind the Bill. Indeed, I see that Jo Churchill is also here today and we welcome her. I hope that with that cross-party support, the Bill will go through its stages here as quickly as it did in the other place.

I would like to take some time to reflect on the importance of the role of the National Data Guardian. We all know that when collected and used properly, healthcare data has the potential to be transformative for patients. Sharing data offers immense promise for improving the NHS and the social care system, as well as benefiting individuals through unlocking new treatments and medical breakthroughs. Getting information sharing right can create a better experience for people using services and make care more efficient. Too many people with serious conditions have to tell the same story to multiple people and services involved in their care. Appropriate data sharing could eliminate any unnecessary burden. As well as that, if commissioners have access to data that they need to make the decisions about the best use of their resources locally and nationally, services can be provided where they are most needed and available funds can be maximised and budgets fully optimised.

Of course, our ability to unlock the benefits of data sharing relies on the public having confidence in the health and care system’s appropriate and effective use of data. If data and information is to be used effectively to support better health and care outcomes, the public have to have trust and confidence that there are strong safeguards in place to protect it from inappropriate use. The establishment of the National Data Guardian as an authoritative and independent voice for the patient and service user on how their data and information is used is a crucial element in that. This short but important piece of legislation will promote challenge and build assurance across the health and social care system, enabling the system to access the data it needs to run safely, effectively and efficiently. A statutory National Data Guardian will enable the postholder to speak with increased authority. A statutory basis increases strength of argument, allowing for guidance to be published as standards and good practice to which relevant organisations must have regard.

Importantly, the National Data Guardian is not a regulator. The role is first and foremost to support organisations and individuals who use health and care data to do so in accordance with the relevant laws and good practice. Placing the role on a statutory footing was a manifesto commitment of the Government, and the Government’s support has been clear throughout the Bill’s progress. The Bill will be significant in maintaining public trust and confidence in the appropriate and effective use of health and care data.

I shall give a short summary of the provisions of the Bill, which consists of only six clauses and will establish the statutory role of the National Data Guardian. The Bill also makes provision for the administrative and financial operation of the National Data Guardian’s office. The Bill will give the National Data Guardian the power to publish formal guidance and provide informal advice, assistance and information relating to the processing of health and adult social care data in England. The Bill imposes a corresponding duty on public bodies within the health and adult social care sector and private organisations that contract with them to deliver health and adult social care services. They must have regard to the National Data Guardian’s formal published guidance.

The Bill requires the National Data Guardian to consult with appropriate persons before publishing the guidance and requires the National Data Guardian to produce an annual report including a set of accounts, details of advice given and guidance published in the previous financial year, and the priorities in the forthcoming year. The Bill gives the Secretary of State the power to provide for the commencement of its provisions, and requires him or her to appoint an individual to hold office as the National Data Guardian.

A money resolution to authorise money for the Bill was laid before Parliament on 21 May 2018. The expenditure of £725,000 per annum is necessary for the Office of the National Data Guardian to undertake its statutory function. The cost is based on the current £500,000 per annum provision for the existing non-statutory National Data Guardian office. The overall increase in spend of £225,000 per annum relates predominantly to additional team resources to strengthen the National Data Guardian office’s ability to prepare and disseminate statutory advice and monitor its impact and relevance, amid anticipated increased demand for independent legal advice and assurance, along with a further responsibility for communication and engagement, including delivery of formal guidance, production of an annual report and accounts, and raising the profile of the National Data Guardian’s website.

I will reflect on a few points which have been raised in discussions over the past couple of weeks. With regard to whether the statutory National Data Guardian will have access to the Information Commissioner’s Office, the National Data Guardian already has a formal understanding and close working relationship with the Information Commissioner’s Office. That is covered by a memorandum of understanding. We would expect to see this updated to reflect the statutory footing. The statutory role allows the opportunity to build on the relationships already developed with regulatory bodies, including the Information Commissioner’s Office, the CQC and NHS Improvement, and to support them in their responsibilities around ensuring that appropriate practices are being adopted by regulated organisations.

I draw your Lordships’ attention to the fact that the Act would come into force,

“on such day as the Secretary of State may by regulations appoint”.

Regulations to this effect made under Clause 5 are to be made by statutory instrument. The Bill contains no other regulation-making powers. There is no intention to amend this.

Lastly, the Bill’s provisions extend to private sector providers that contract with public bodies to deliver health and adult social care services. These must have regard to the National Data Guardian’s published guidance. Data held by privately arranged and funded health and adult social care providers is not covered by the Bill. However, private providers of healthcare will have access to NHS patient data in the vast majority of cases—for example, where patients give their consent for their records to be shared—but this alone will not bring them within the scope of the Bill. The NDG’s remit extends to all health and adult social care data but purely private bodies are not required to have regard to published guidance.

Placing the National Data Guardian on a statutory footing is important for many reasons. This is a significant time in the history of health and care and it is critical to maintain and strengthen public and patients’ support. People want to know what their data is being used for, who it is being shared with and why. A statutory National Data Guardian will be key in ensuring that citizens’ confidential information is safeguarded securely and used fairly and lawfully. I thank everyone for their help so far and I hope that we can make swift progress with the Bill. I beg to move.

--- Later in debate ---

[Baroness Chisholm of Owlpen]

My Lords, I thank noble Lords for their contributions today and support for this Bill. I must say, my life this morning has been made much easier, because my noble friend the Minister has answered all the questions raised, which I thought I was going to have to do. I feel that I have got off rather lightly, and he has done it so much better than I could have.

The NDG Bill is significant at a time when we must ensure that we maintain and strengthen public/patient support on the use of data for health and social care. As your Lordships know, it is in the greater use of technology and the integration of health and social care that the future of healthcare lies. I look forward to continuing dialogue with your Lordships as the Bill progresses. I ask the House to give the Bill a Second Reading and beg to move.

Bill read a second time and committed to a Committee of the Whole House.

Health Inequality: Autism and Learning Disabilities

Baroness Chisholm of Owlpen Excerpts

Thursday 10th May 2018 Grand Committee

[Baroness Chisholm of Owlpen (Con)]

My Lords, I thank the noble Lord, Lord Touhig, for initiating this debate. I shall speak on the importance of early diagnosis of children who are showing signs of HFA and Asperger’s syndrome. It is still hard to get a diagnosis, partly as there is no fixed set of behaviours common to all, but there are clear signs that healthcare professionals should be trained about when faced with a toddler or older child. There is also the problem of the invisibility of autism in the healthcare system, so it is vital for professionals to trust parental instincts and listen to their concerns to ensure that every individual with autism receives the correct care and support throughout their life.

It can make a difference if the condition is diagnosed early. Though frightening and bewildering, it is essential for parents and children to be able to move forward. With a diagnosis, they can understand why they are like they are. It can prevent distress as the child develops and can stop further physical illness. Many high-functioning children with autism are not diagnosed until they enter school and start struggling socially. By 24 months an autism diagnosis tends to become stable, but from 18 months onwards an intervention programme can be highly effective in improving IQ, language ability and social interaction. Research has shown that children are waiting more than three and a half years for an autism diagnosis. Parents who are involved with early diagnosis and treatment have found they are better equipped to give specific support at varying stages of the child’s development.

I welcome the fact that data collection within the NHS starts in April next year, but no decision has been made on data collection within GPs’ surgeries. A flag against a patient’s file could assist the GP and the person with autism, particularly those who have no outward physical signs. The noble Lord, Lord Touhig, mentioned the anxiety that this can cause. Decision-makers cannot plan services locally unless they know how many people need to use them. Without accurate information, autistic people can be left without the right support being available. Anonymised data from GP records would provide decision-makers with the data they need to plan effectively.

Around 70% of children on the autistic spectrum go to mainstream schools. Before a diagnosis is given, these children are often marked as disruptive. I welcome the Government’s strategy that, from September, every new teacher will have autistic training within their curriculum. What training is available for classroom assistants? Some of the most successful people in the country have an autism diagnosis, but we need to ensure that the collection of social and health data relating to autism becomes more co-ordinated and systematic; that local authorities’ and GPs’ information systems allow the collection of data from toddler-age upwards; and that provision of school nurses and health visitors who can identify those with autism is built into tendering arrangements for health service agreements with schools and colleges. If as a society we can follow through on the above, I hope that those with autism will feel that they have not been forgotten, do not have to struggle for their identity within their community and can reach their potential, and that those who care for them feel that they can get the support they require.