Down Syndrome Bill

Robert Goodwill Excerpts

Committee stage
Wednesday 26th January 2022 Public Bill Committees

I set out the rest of the arguments on Second Reading and I do not intend to repeat them today, but those are the main points that take the Bill into a slightly different and more important realm. The Committee has worked together and there has been Government and cross-party support, and that has enabled us to bring these changes forward in a meaningful way. Getting the support almost certainly means that the Bill will progress to its remaining stages, potentially on 4 February, and get out of the House of Commons quickly. That is a good example—I can think of no better time than this to say it—of our ability to manage our affairs in Parliament without daily psychodrama and of the fact that when we want things to be done in a reasonable way, it is entirely possible for us to do that. That is what our constituents and those who will benefit from the Bill expect.

[Sir Robert Goodwill (Scarborough and Whitby) (Con)]

Does my right hon. Friend believe that the Bill creates a precedent for other conditions such as 22q11.2 deletion syndrome, which affects a smaller number of people but manifests in a similar way?

[Dr Fox]

The Minister may say something about that when she makes her remarks, but it is entirely possible that, when guidance is given and there is a named person on the integrated care board, the Bill’s provisions and the measures required to apply it would reasonably be applied to other conditions of that nature.

Again, the fact that the guidance will be laid before Parliament gives us an opportunity in Parliament to deal with the very issues that many Members have reasonably raised. As all colleagues will know, we put Down syndrome as the only condition because of the difficulty of getting a private Member’s Bill through. Getting support requires it to be simple and concise. The fact that the guidance is laid before Parliament enables us to take the legislation forward in a proactive way without too much actually being said in the Bill. That is a good model for how we can take legislation of this nature through in future. I am grateful to my right hon. Friend the Member for Scarborough and Whitby and congratulate him in Committee for the first time on the honour recently—belatedly but very justifiably—bestowed on him.

I go back to the point: the fact that the guidance is laid before Parliament gives us all the chance, on behalf of our constituents, to look at some of these other conditions. If it applies for Down syndrome, why should it not apply in the same way and through the same mechanisms for other conditions? That is an important issue for the Committee to have addressed. With that, I conclude my remarks.

--- Later in debate ---

[Gillian Keegan]

First, I will deal with rare genetic disorders other than Down syndrome. We recognise that people with genetic conditions other than Down syndrome may experience problems similar to those of people with Down syndrome, so we will consider the overlaps and linkages between such conditions and Down syndrome through consultation on the development of the guidance. I will go on to address employment.

I commit that the Secretary of State will ensure through statutory guidance that the integrated care boards will have a named lead for overseeing the implementation of the guidance issued under the Bill. That named lead will ensure that Down syndrome statutory guidance is implemented and considered throughout the commissioning decisions of an integrated care board. That will play an important role in ensuring that there is accountability for improvements at the local level and that the intentions behind the Bill are fully raised across Government.

[Sir Robert Goodwill]

Does the Minister accept that while many Down syndrome sufferers can get into the workplace and make a real contribution, there are others who are very profoundly affected—who cannot communicate and have great behavioural problems? I know that from experience with my wife’s family. These are not the Down syndrome sufferers who we see in the media; these are people who often have to be kept in a controlled environment with 24-hour care.

Oral Answers to Questions

Robert Goodwill Excerpts

Tuesday 18th January 2022 Commons Chamber

[Sajid Javid]

I thank the hon. Lady for raising the matter in the House. Pulmonary fibrosis is a very serious condition. Far too many people suffer from it, and there needs to be more research globally—not just here in the UK, but working with our international partners. I will bring the matter to the attention of my officials and see what more we can do.

[Sir Robert Goodwill (Scarborough and Whitby) (Con)]

Sadly, the situation in Scarborough and Whitby for patients seeking a new NHS dentist is no better than that in St Ives, with thousands of UDAs going unused. Dentists tell me that it would help to have a date for the end of the UDA system so that they could start recruiting staff and, in some cases, building new premises to deliver NHS dentistry to local people.

[Maria Caulfield]

My right hon. Friend is correct. As I said earlier, the disastrous contract of 2006 is causing disincentives for NHS dentists to take on NHS work. I assure my right hon. Friend, however, that dental services in Scarborough are currently being commissioned by NHS England following the handing back of dental regional accountability. Procurement processes are in place, and a new practice is set to be in place by the summer.

Smoking Cessation: Prescription of E-cigarettes

Robert Goodwill Excerpts

Monday 1st November 2021 Commons Chamber

[Maggie Throup]

I welcome the right hon. Gentleman’s support on the issue we are talking about and on our ambitions to make this country smoke free by 2030.

On the MHRA, the updated guidance provided further details on the steps required to license an e-cigarette as a medicinal product. To achieve a licence, a product would need to meet the standards of quality, safety and efficacy expected of a medicinal product. If successful, that would potentially allow safe and effective products to be made available for prescription for tobacco smokers who wish to quit. The update provides clarification and gives more guidance to potential providers on that issue.

The right hon. Gentleman asked about timescales. We anticipate that if a product was put to the MHRA today, for example, there could be an 18 to 24-month process for that product to be licensed. At this stage, we could not say anything further than that, so we are quite a long way from any e-cigarette being licensed and provided as a prescription medicine.

The public health grant increased by £135 million in 2020-21 and by £55 million in 2021-22. With regard specifically to the public health grant for smoking services, it is up to the local authority to decide how it spends its allocation of funding, but in addition, in our long-term plan, we have committed to helping to drive smoking cessation for a number of different groups. We want to provide help with cessation plans for in-patients and pregnant women, and to provide support for those with mental health and learning disabilities to tackle their smoking addictions. All in all, a lot of money is being spent both at the public health level and at the NHS level. We will continue to make sure that we do whatever we can in our power to make England smoke free by 2030.

[Mr Robert Goodwill (Scarborough and Whitby) (Con)]

Many people who wish to stop smoking are motivated by the wish to be healthier, but there is also a financial impact on the family from somebody smoking, not least because the Chancellor put 88p on the most expensive cigarettes and even the cheapest are almost a tenner now. However, many people buy cigarettes under the counter or from a mate down the pub. Will the Minister engage with her opposite number in the Home Office to ensure that combating tobacco smuggling remains a priority for Border Force?

[Maggie Throup]

My right hon. Friend makes a very good point. I promise I will engage with my opposite number in the Home Office to tackle the illicit import of cigarettes and other substances.

Covid-19 Update

Robert Goodwill Excerpts

Tuesday 9th February 2021 Commons Chamber

[Matt Hancock]

We have put in place that support, including £500 for all those on low incomes. Everybody who is asked to self-isolate needs to self-isolate to break the chains of transmission.

[Mr Robert Goodwill (Scarborough and Whitby) (Con)]

What lessons can we learn from Israel which, uniquely, is ahead of us in this race to protect its people? For example, when we reach group 10—under-50s who have not already been injected—should we prioritise those who have not been exposed to the disease and who are not bursting with antibodies, so that we actually protect more people? Incidentally, the Israelis are also injecting 16 and 17-year-olds. Are there any lessons to be learned from that?

[Matt Hancock]

I talk to my Israeli counterpart regularly, and I am impressed by the effort that Israel has delivered on to vaccinate its population. I am very happy to look into the detailed points that my right hon. Friend raises.

Health Protection (Coronavirus, Restrictions) (No. 2) (England) Regulations 2020

Robert Goodwill Excerpts

Thursday 16th July 2020 General Committees

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

I beg to move,

That the Committee has considered the Health Protection (Coronavirus, Restrictions) (No. 2) (England) Regulations (S.I., 2020, No. 684).

What a privilege it is to serve on the Committee for your very first time in the Chair, Mrs Murray. I hope it will be an enjoyable sitting for us all. The regulations, which were made on 3 July by the Secretary of State for Health and Social Care, my right hon. Friend the Member for West Suffolk (Matt Hancock), came into force on 4 July. We had previously amended the original regulations, but the amendments made at this stage resulted in a significant number of changes.

It is for that reason that the original regulations were revoked and replaced with a set of new regulations, to make the legislation clearer and easier for the public to understand. The SI has not been formally cleared by the Joint Committee on Statutory Instruments. Further changes were made following the announcement made on 9 July by the Secretary of State for Digital, Culture, Media and Sport, my right hon. Friend the Member for Hertsmere (Oliver Dowden), and a set of amendments to the regulations that were made on 10 July came into force on 11 July and 13 July. Those changes will be debated on 20 July.

I am aware that there are concerns in Parliament about allowing for the timely scrutiny of regulations that have been laid and made in response to the public health emergency caused by coronavirus, particularly relating to the timing of debates. I am sure that my right hon. Friend the Secretary of State for Health and Social Care will bring these matters to the fore today. We have listened to those concerns and have endeavoured to hold this debate as soon as possible after the regulations were laid.

I acknowledge the situation in Leicester and appreciate how hard it must be for the people who live there. Although the rate of infection is declining nationally, we have been clear that we must take swift action to keep people safe when local outbreaks are identified. It is now vital that everyone in the protected area in and around Leicester stays at home and avoids non-essential travel. Anyone with symptoms needs to come forward for a test and share their contacts with NHS test and trace if they test positive.

We will continue to monitor rates of infection across the country, to work with local authorities, and to take action locally where necessary. In the event that the local response is not sufficient to deal with an outbreak, including to prevent the virus from returning to general circulation, the Government will act rapidly. We are in the process of drafting new regulations to enable action to be taken, and we will be ready to reintroduce national measures if necessary to control the spread of the virus.

We are now in phase 3 of our recovery strategy, as the Prime Minister set out in the Government’s roadmap on 11 May. Through continuous review of the measures, we have gradually and cautiously replaced existing social restrictions with targeted measures to ensure that any remaining restrictions are proportionate and necessary. In his statement to the House on 23 June, the Prime Minister announced the changes that we are debating, which came into force on 4 July.

The regulations enabled the reopening of many businesses across different sectors of the economy—a welcome change for many and a significant moment in our journey to restart the economy. Most of the restrictions on social gatherings are no longer set out in legislation, but the Government continue to issue guidance to support the public in meeting friends and family in a safe and appropriate way. We understand how vital it is for people to maintain contact with friends and acknowledge the positive impact that has on wellbeing and mental health. As we have done throughout the pandemic, we are trusting the British public to remain alert and stick to the published guidance.

I will now outline the changes made on 3 July, which came into effect on 4 July. These include: easing the restrictions on gatherings and overnight stays by removing most of the relevant rules from legislation and issuing guidance to support the public to meet their friends and family safely; allowing more sectors to reopen, including hospitality, leisure, tourism, recreation and sport; allowing further public and community services to reopen; and continuing to require some businesses considered too high risk to remain closed. The regulations also provide new powers to close public open places where it is considered necessary to do so, to prevent, protect against, control or provide a public health response to the incidence or spread of coronavirus.

[Mr Robert Goodwill (Scarborough and Whitby) (Con)]

Last week I received a letter from someone who delivers complementary therapies. What consideration has the Minister given to allowing such treatments to recommence, as many patients seem to find them useful?

[Jo Churchill]

The opening of massage parlours, spas and so on was laid out in subsequent regulations, and they have been allowed since 13 July. Perhaps I can have a conversation with my right hon. Friend on the specifics of the type of treatment to give him a fuller answer on whether they are allowed. It is about the context. As we have seen with beauty parlours, which are reopening, there are still restrictions on facial treatments that require proximity.

[Maria Eagle (Garston and Halewood) (Lab)]

I think many of us have received such representations. Does the exchange we have just heard not illustrate that one of the problems with the regulations and the law is that their sheer complexity and swiftly changing nature make it difficult for even the most assiduous of observers to keep up to date with where we are? In that regard, the guidance to which the Minister has just referred is incredibly important. How will she ensure that people can understand the fast-moving current state of the regulations and the law?

[Mr Goodwill]

rose—

[Jo Churchill]

I thank the hon. Lady. If she will excuse me, I will take another intervention from my right hon. Friend the Member for Scarborough and Whitby and then answer both.

[Mr Goodwill]

I support what the hon. Member for Garston and Halewood said. My constituent was a sports physiotherapist, but he was also representing people who do acupuncture, yoga or homeopathy, which are still not permitted.

[Jo Churchill]

What both my right hon. Friend and the hon. Lady are outlining is that the approach has had to be measured and consistent with Public Health England advice for specific areas. That guidance is available on gov.uk. My right hon. Friend has articulated different treatments, some of which need a degree of invasiveness. Guidance on that is incremental, and the Government are endeavouring to give people accurate information in a timely fashion.

However, I would readily say that there are times when there is perhaps a degree of confusion. At that point, if one refers to PHE guidance and gov.uk, one will find that it articulates why PHE is making changes incrementally. I am sure that no one on the Committee would have wanted us to open up at a more rapid rate and seen a rise in the R number. All of this is about us working permanently to keep control of the R number while trying to allow the economy to reopen.

On 6 July, the Secretary of State for Digital, Culture, Media and Sport announced that further amendments would be made to continue to ease existing restrictions and reopen many businesses and facilities. The changes being made, along with the updated guidance, have allowed team sports, rehearsals and outdoor performances to resume, with close contact services—including nail bars, salons, tanning booths, spas, massage parlours, body and skin-piercing services—and outdoor swimming pools and waterparks to reopen from 13 July. Those amendments will be debated on 20 July in the House. Our assessment that we are meeting the five tests, which we set out as considerations for change, mean that more restrictions will be lifted.

Covid-19 is the biggest challenge the UK has faced in decades.It threatens to take both our way of life and our loved ones from us. That is why the Government put in place strict social distancing measures, to slow the spread of the virus so that the NHS would not be overwhelmed. Thanks to the hard work and sacrifice of the public, and despite the extremely tragic loss of life, the UK has slowed the spread of the virus. We have been working with and consulting widely with businesses and organisations throughout the pandemic and continue to receive expert scientific advice from SAGE—the Scientific Advisory Group for Emergencies—the chief medical officer and the chief scientific adviser, as we continue to work on easing the restrictions as soon as it is safe to do so.

I have already noted that further amendments were made to the regulations on 10 July, which will be debated in due course. I am grateful to all parliamentarians for their continued engagement in the process and for their valuable scrutiny.

Coronavirus Update

Robert Goodwill Excerpts

Tuesday 14th July 2020 Commons Chamber

[Matt Hancock]

The information that the right hon. Lady has requested is available to directors of public health in upper-tier local authorities, and we are extending that further. In addition, I want to see much more data published as open data, and I have requested that that happens. I am sure it will happen soon, but the truth is that, following a request from directors of public health right across the country, we have extended a huge amount of data to them. Those who have signed data protection agreements in upper-tier local authorities and who have the statutory responsibilities for dealing with this have got the data down to the personal details that she requests.

[Mr Robert Goodwill (Scarborough and Whitby) (Con)]

On a conference call with the North Yorkshire resilience forum yesterday, I discovered that while the borough of Scarborough had experienced 561 cases in total, apart from one isolated case on 3 July, we have not had an infection since 23 June. Will the Secretary of State join me in paying tribute to the people of Scarborough and Whitby not only for so assiduously following the Government guidelines, but for applying liberal quantities of Yorkshire common sense?

[Matt Hancock]

Absolutely. The people of Scarborough have been well represented and well led by my right hon. Friend. They are doing a great job in following the social distancing rules and making sure that they take appropriate precautions, and as a result, the disease has been suppressed in Scarborough. I am sure that the people of Scarborough will be able to enjoy summer safely.

Coronavirus

Robert Goodwill Excerpts

Tuesday 7th July 2020 Commons Chamber

[Matt Hancock]

Because the contract is with the Department, and the reporting comes through the Department.

[Mr Robert Goodwill (Scarborough and Whitby) (Con)]

Does the Secretary of State share my admiration of careworkers on the Yorkshire coast, including those in a care home in my constituency where an outbreak among admin staff in the office was contained and not spread to forward-facing staff or residents? Will he also undertake to support local authorities such as North Yorkshire County Council, which in the past fortnight has had to close two care homes in Scarborough run by the same company, where evidence from the Care Quality Commission showed that the level of care was unacceptable and potentially dangerous?

[Matt Hancock]

Yes. My right hon. Friend raises an incredibly important point. I pay tribute to those care homes, in Scarborough and across the country, that have done the right thing and are tackling outbreaks when they find them, including some that go to extraordinary lengths to protect their residents, not least because we know that care home residents are among some of the most vulnerable to coronavirus. But at the same time, we must ensure that the level of care remains high, and the CQC does have an incredibly important role in that.

NHS Funding Bill

Robert Goodwill Excerpts

2nd reading & 2nd reading: House of Commons
Monday 27th January 2020 Commons Chamber

[Matt Hancock]

I would be careful about making that argument if I were the hon. Gentleman. Over the last decade, the Scottish Government have increased spending on their NHS slower than we have in England. I will not take second best—I will not take the retrograde Scottish National party attitude. No wonder the SNP bangs on so much about its dream of breaking up this country—it cannot defend its record on the NHS.

[Mr Robert Goodwill (Scarborough and Whitby) (Con)]

The Secretary of State has already mentioned the 50 million additional GP appointments, but are not 13 million GP appointments and 6 million nurse practice appointments already missed annually—not to mention the people turning up at A&E who are neither accidents nor emergencies? Can we do more to make sure that the money spent is spent more effectively?

[Matt Hancock]

Yes, absolutely. If we use technology to set up a better booking system for GPs, it turns out that we reduce by a third the number of times people do not attend.

Draft Nutrition (Amendment etc.) (EU Exit) Regulations 2019

Robert Goodwill Excerpts

Thursday 28th February 2019 General Committees

[Steve Brine]

Yes, you may.

[Mr Robert Goodwill (Scarborough and Whitby) (Con)]

The Minister has not referred specifically to kava kava, a foodstuff that can have similar effects to alcohol and that was banned by the United Kingdom in 2003 because of the effects it can have on the liver. Under EU regulations, we could not ban the transit of kava kava. Once we have left the EU can we actually ban its transit? Many people are worried that these goods can be bought online and the transit of kava kava may be intercepted as it passes through the UK.

[Steve Brine]

I cannot say that I am familiar with kava kava, but because we are closely aligning in this area, everything that we have agreed to thus far would be transferred. After exit day, as I said, nothing new would be transferred, but it would then be for the body I mentioned that is being set up and members appointed to it, through accountability to me, to the Secretary of State and to this sovereign Parliament, to make any changes that it deemed were appropriate. I have a funny feeling that my right hon. Friend might return to this subject after exit day, and he would be entitled to do that. I dare say it would be one of the benefits of taking back control.

As the statutory instrument proposes no significant changes to the current regulatory regime, we estimate that there will be no significant impact on the public sector. Regarding the impact on industry, we have consulted with industry and other interested groups through our public consultation, which ran in December. Our analysis of the consultation showed that overall respondents were supportive of the proposals, but more detail was sought on how they might work in practice. We published our consultation response on Monday 25 February. We are confident that the guidance, which my Department is due to publish shortly, will provide all the additional details that respondents requested. I will ensure that, after publication, it is copied to members of the Committee, who I am sure will retain an interest in this matter after we leave Committee Room 9 today. Respondents should be reassured that our guidance is currently being tested with stakeholders to ensure that it is fit for purpose, and exposes industry and other affected parties to minimal procedural changes.

The British public and food manufacturers will not lose out in any way from the amendments contained in this statutory instrument as a result of Britain leaving the European Union. I believe it is important to stress again that the amendments will provide continuity for businesses and ensure that the exceptional standards of safety and quality for nutrition regulation already in place will continue long after our exit from the EU. I have said time and again publicly and before the Select Committee, and I will repeat again now, that there is nothing about us leaving the European Union that in our view will degrade our capability or responsibility to the British public in this area. I am not sure I can be clearer about that. I commend the regulations to the Committee.

[Mrs Sharon Hodgson (Washington and Sunderland West) (Lab)]

It is indeed a pleasure to serve under your chairmanship, Mr Evans, and to be here discussing this draft amending regulation. I thank the Minister for writing to me in advance and for his summary this morning. However, I have started all of my speeches on Brexit SIs with a caveat, and I will do so again this morning. I apologise for any repetition.

We are now just 29 days away from Brexit day, 29 March, as I am sure everyone is well aware. It is deeply concerning that we are still planning for a no-deal scenario when we are so close to the deadline. I know that we have many, many more public health SIs to get through in that time, and I am worried that we simply will not have enough time to prepare properly. I hope the Government will take no deal off the table.

I thank the Minister for his letter asking for my support on the regulations. He does have my support, but as always I have some questions, and as always I know he will try to answer them. The explanatory memorandum says that there will be a low level of impact on businesses, but no impact assessment has been made. It admits that there will be some additional administrative burden on businesses, but that it will only be an extra 30 minutes of additional paperwork for applications to make health claims in both the UK and the EU. Is the Minister convinced that that is a realistic assessment? The consultation response document says:

“Some respondents raised concern that the consultation under-estimated the additional burden caused for submitting a new claim.”

Has the Minister made any assessment of that since the consultation document was published?

The consultation document was published sooner than anticipated, and I thank the Minister for that, but I am concerned about how short the consultation period was—only 10 working days. I know that we are fast approaching Brexit, but allowing such a short time for businesses, stakeholders and the public to participate in a consultation is alarming, particularly when legislation is drafted as a result. If we are going to get no-deal planning right, we need more time and expertise to look into such detailed legislation.

Throughout the consultation response paper, it is clear that respondents wanted more detail from the Government. We need more detail on risk assessments, management processes and on how mirroring EU regulation would work in practice. The devil really is in the detail and the Government have failed to provide any detail at all. Will the Minister tell us when we will have that crucial detail at our fingertips? Concerns were also raised about integrated supply chains, particularly if the UK failed to be aligned with EU lists on product labelling. Will the Minister address those concerns?

The UK has a long tradition of collaboration with the European Food Safety Authority. Does the Government have a commitment to working with EFSA in the event of a no-deal Brexit? I know the Government are in the process of establishing the UK nutrition and health claims committee, the UKNHCC—not a very catchy acronym or easy to say. What relationship will EFSA have with the UKNHCC in the event of a no-deal Brexit?

[Mr Goodwill]

The hon. Lady is painting a grim picture of a no-deal Brexit. Surely it is within her power to vote for the deal on 12 March and take the instruction that 61% of the people in Sunderland gave her at the referendum?

[The Chair]

Order. Let us not go too wide in our discussions.

Appropriate ME Treatment

Robert Goodwill Excerpts

Thursday 24th January 2019 Commons Chamber

[Carol Monaghan]

Yes, ME receives far less research funding than other similarly prevalent conditions. That, I fear, reflects the attitude of some in the medical community who consider it to be behavioural rather than a pathological condition.

[Mr Robert Goodwill (Scarborough and Whitby) (Con)]

Will the hon. Lady give way?

[Carol Monaghan]

I shall have to keep going. I apologise, but a great many Members want to speak.

The psychological view of ME led to the controversial and now debunked PACE trial—PACE is “Pacing, graded Activity, and Cognitive behaviour therapy; a randomised Evaluation”. The researchers reported that with cognitive behavioural therapy and graded exercise therapy—in which patients were encouraged to attempt increasing levels of exercise—approximately 60% of patients “improved” and 22% “recovered”. The treatments were labelled safe. Patient groups, however, were saying the opposite. Many who were able to walk when they embarked on a course of graded exercise dropped out of the treatment in wheelchairs or bedbound. Furthermore, patients were pressurised to describe improvements that they did not feel. As the trial progressed and the results did not meet the authors’ expectations, they simply lowered the threshold to define improvement. In some cases, those whose condition had deteriorated were classed as “recovered”. That is simply not good science.

The recommendation of graded exercise has caused untold physical damage to thousands of people. In fact, a 2018 survey found that 89% of ME sufferers experienced worsened symptoms after increasing activity. If graded exercise were a drug, it would have lost its licence.

The blatant ongoing refusal to accept ME as physiological doubtless explains the lack of proper research. Of course it is the Medical Research Council that allocates funds, but the Government can demonstrate their true commitment to improving the lives of ME sufferers. The Scottish Government have committed £90,000 for a PhD scholarship to support research into the causes, diagnosis and treatment of ME, and I would ask that the UK Government follow this lead.

During the debate in June, the Minister for public health, the hon. Member for Winchester (Steve Brine), who is in his place, said that £2.62 million had been spent on ME research since 2011. Let me be very clear: this money was spent on behavioural studies. We need money to be spent on biomedical research, and we are looking for a solid commitment from the Minister.

Until we have developed effective treatments, however, we must ensure suitable care plans are in place to respond to patients’ varying needs. Many US agencies are now removing their recommendations for graded exercise. However the National Institute for Health and Care Excellence guidelines continue to advocate this, despite patient surveys consistently indicating its harm. The risks are not acknowledged in the guidelines, undermining patients’ ability to give informed consent, and some patients are being threatened with being sectioned if they do not commit to a programme of graded exercise.

[Mr Goodwill]

Will the hon. Lady give way?

[Carol Monaghan]

Very briefly.

[Mr Goodwill]

Many consider the NICE guidelines to be completely inappropriate. Does the hon. Lady agree that the timescale for that review, which will end in 2020, is far too long for these patients?

[Carol Monaghan]

Actually, NICE has taken a very positive step in reviewing the guidelines—it is listening to the community—but until they are published in 2020, we need NICE to make a public statement about the potential harm of graded exercise; patients must be made aware of the risk. It is a big ask to request that the Minister talks to NICE and encourages it to make that statement, so that this information can be added to the current guidelines while we are waiting for updated guidelines in 2020.

Care programmes for people vary greatly. Some with ME describe medical professionals who are sympathetic, but others talk of being disbelieved and forced down treatment paths to which they have not consented. Coverage of ME in many medical textbooks remains potentially misleading and inadequate, even non-existent. Health professionals must be equipped with clear guidance on diagnosing ME early and accurately, and with appropriate basic management advice.

At the end of last June’s debate, the Minister for public health resolved that

“as a result of the debate I will redouble my efforts to”

raise awareness among medical professionals concerning ME, and said that

“as part of my role as Minister for primary care, all GPs certainly should be aware of ME”.—[Official Report, 21 June 2018; Vol. 643, c. 229WH.]

That was a welcome statement; I would now like to understand what concrete steps have been taken since that promise was made. Furthermore, I would ask the Minister to ensure that ME clinics and treatment centres are aware of the risks of graded exercise and are not forcing this on patients.

Some of the worst cases we hear about are children with ME. ME affects an estimated 25,000 children in the UK. Many experience significant distress when disbelieved by medical and teaching staff, often when these professionals do not understand how ME affects the child’s ability to attend school.