Down Syndrome Bill

Douglas Chapman Excerpts

Friday 26th November 2021 Commons Chamber

[The Minister for Care and Mental Health (Gillian Keegan)]

I, too, congratulate my right hon. Friend the Member for North Somerset (Dr Fox) on securing the Second Reading of his private Member’s Bill, the Down Syndrome Bill.

My right hon. Friend’s passion to help address the challenges faced by people with Down’s syndrome has been unwavering, and I want to thank him and all those who support the Bill—and many colleagues are here today—for bringing forward a Bill to address these challenges. I thank all hon. Members for their contributions, and I have really enjoyed the debate. I, too, have learned a lot, and it is such an important time for such an important debate. I also want to pay tribute to Sir David Amess, who cared deeply about supporting people with learning disabilities. He was arranging for us to have a cup of tea to discuss how we could work together to do this. Sadly, this cannot happen now, but I want today to mark Sir David’s passion for improving the lives of all those people with learning disabilities.

People with Down’s syndrome should have the opportunity to enjoy all aspects of our society, and to have access to the services and support that will enable them throughout their lifetime, and I wholeheartedly support the Down Syndrome Bill. Sometimes we are lucky enough to be in the right place at the right time, and this is one of those occasions for me, because my nephew, Joseph Gibson, is one of the estimated 47,000 people in the UK who have Down’s syndrome. Joseph is a funny and bright teenager. He loves his school, has a great group of friends and is a huge football fan, supporting Liverpool, of course, and also his local team, the O’s—Leyton Orient. Most importantly, Joseph is happy and thriving. He is learning and developing, and he demonstrates his ability, not his disability every day, as all young people and adults with Down’s syndrome do.

However, my brother and sister-in-law, Marcus and Sara, have had to work incredibly hard to access the services that have made it possible for Joseph to develop his confidence and independence. We have heard from many other families—and I pay tribute to those who are up in the Gallery today—about how difficult they have found it and how much they have been fighting that battle. I want everybody to know that through this Bill, with our support for it and everybody’s support for it in this Chamber, I hope those battles will become a lot easier. I know that today people with Down’s syndrome are struggling to access the services they need, and I have seen this with my own family. It is not right, it must change and we will change it.

I recognise that the legal duties and frameworks are already in place to ensure services are tailored to people’s needs, but we know this does not always happen for people with Down’s syndrome and their families. There is a pressing need to raise awareness of the unique needs of people with Down’s syndrome and how they can be met, so that public authorities know how to meet their existing duties and people with Down’s syndrome can thrive in their community. That is exactly what this Bill seeks to address.

For the first time, the Government will be required to publish guidance on the specific needs of people with Down’s syndrome and how to meet them. The relevant public authorities providing health, care, education and housing services must have due regard to it in carrying out their functions. This is a significant obligation on authorities, and there can only be strong reasons for not following this guidance. Importantly, people with Down’s syndrome and their families will be at the heart of this. They will be involved in the development of the guidance, as well as with those responsible for planning and designing these services.

I believe the impact of the Bill will be wide-reaching. It creates the foundation to ensure that people with Down’s syndrome stay well, receive the right education for them, and secure the appropriate living arrangements to support their transition into employment and into their old age, and to help them be a part of our society in the way that they want to be.

Why do we have before us a Bill that focuses specifically on people with Down’s syndrome, and why now? Down’s syndrome is a genetic condition. Every person with Down’s syndrome is a unique individual but they often face common health risks: almost half of children born with Down’s syndrome have a heart condition; they face significantly higher risk of becoming unwell through infection, which can be life-threatening; and they may, and often do, also need additional support with their speech, hearing or vision. Evidence tells us that people with Down’s syndrome have specific patterns of development unique to this condition. Sadly, there is an increased risk of early onset dementia. The NHS recommends regular check-ups to look for signs of that from the age of 30. I also wish to acknowledge that mental health and physical health are two very different things, and we will very much look to focus on the mental health of people with Down’s syndrome, through our mental health strategy, which we will be working on throughout the coming months.

Thankfully, people with Down’s syndrome are living longer. This is not 1983 or 1984, when the hon. Member for Nottingham North (Alex Norris) was born and when people with Down’s syndrome lived, on average, to 25 years old. In 2021, people with Down’s syndrome are living, on average, to 60—I am pleased to see that this is continuing to increase, as is the pace of increase. It is clear that this Bill is not about giving people with Down’s syndrome more rights or enhanced treatment relative to others; it is about ensuring that there is a level playing field, so that they can access the services that they are entitled to in the same way as everyone else and that their needs are understood, so that services will be developed to meet those needs.

On redress, I fully recognise that, despite the legislation, there may still be occasions when people with Down’s syndrome and their families do not feel that their needs are being met, and there must be clear, accessible and fair processes for people with Down’s syndrome and their families to raise concerns. We want people with Down’s syndrome and their families to be able to resolve concerns with authorities directly. These processes should be easily navigated and not at great cost to families. We are considering how the routes to redress are working for people with Down’s syndrome and whether they are delivering the outcomes they need, but it is essential that we get this right and I anticipate returning to this subject as the Bill moves through the House.

This is a hugely important Bill, for all the reasons I have spoken about today. I recognise that providing the right support for people with Down’s syndrome is a matter that resonates across the whole of the UK, and we have heard some contributions from those from other parts of the UK today.

[Douglas Chapman]

Is the Minister in a position to open discussions with the Scottish Government, Welsh Government and the Administration in Northern Ireland to make sure that this is put on the agenda, either during formal meetings or informal discussions, so that the information she has can be shared across the rest of the UK and the benefits of the Bill shared also with those with Down’s syndrome and their families?

[Gillian Keegan]

Yes, some of those conversations have happened but I will very much continue them. The scope of this Bill covers only England, but of course health, care, education and housing are also devolved matters. I know that there is a commitment to improve the outcome for people with Down’s syndrome in Scotland, Wales and Northern Ireland, including through legislation, and I look forward to working with other Health Ministers on this matter. I know that they are committed to doing that as well. I look forward to aligning policy, practice and the guidance wherever possible, so that best practice for social inclusion for all people with Down’s syndrome can be realised across the whole of the UK.

Oral Answers to Questions

Douglas Chapman Excerpts

Tuesday 23rd July 2019 Commons Chamber

[John Mc Nally (Falkirk) (SNP)]

1. What steps he is taking to ensure access to drugs after the UK leaves the EU.

[Douglas Chapman (Dunfermline and West Fife) (SNP)]

6. What steps he is taking to ensure access to drugs after the UK leaves the EU.

[The Secretary of State for Health and Social Care (Matt Hancock)]

Our highest priority is for patients to continue to have access to medicines and medical products in all Brexit scenarios. As a responsible Government, we will minimise any disruption in our exit, deal or no deal.

On 26 June, we set out our approach to ensuring continuity of supply. I discussed this last week with the head of the NHS, and Professor Keith Willett wrote to all NHS trusts yesterday to advise on no-deal planning.

[Matt Hancock]

Yes, we secured the requirements ahead of a potential exit on 29 March, and we are doing the necessary work to ensure that capacity is available, whatever the Brexit scenario, on 31 October.

[Douglas Chapman]

My constituent Jonathan Fisher, known as the Bold Joff, has complex health needs due to a rare genetic condition called Lowe syndrome. He requires six regular medications, three of which come from the EU. They are all vital to his health, but one in particular, Epilim, is critical to his epilepsy care. What reassurances can the Secretary of State give to Jonathan and his mother, Fiona, that when we leave the EU there will be no disruption to his supply of this vital medication?

Eurotunnel: Payment

Douglas Chapman Excerpts

Monday 4th March 2019 Commons Chamber

[Drew Hendry (Inverness, Nairn, Badenoch and Strathspey) (SNP)]

rose—

[Douglas Chapman (Dunfermline and West Fife) (SNP)]

rose—

[Mr Speaker]

I call Drew Hendry.

[Matt Hancock]

It is very important that we always remember that this is taxpayers’ money. One of the duties of Government is to use taxpayers’ money to keep people safe, and that means having an unhindered supply of medicines, which is what we on the Government Benches are working so hard to deliver.

[Douglas Chapman]

This is not about the deal; this is all about incompetence at Government level, with £50 million for the original no-ships contract and a further £33 million in legal compensation to clear up the Eurotunnel mess. Now that the Government have found the magic money tree, how much is coming to Scotland, since we actually have ferries that we want to run?

Hand Hygiene: NHS

Douglas Chapman Excerpts

Wednesday 13th January 2016 Westminster Hall

[Andrea Jenkyns (Morley and Outwood) (Con)]

It is a pleasure to serve under your chairmanship, Sir Alan.

I thank my hon. Friend the Member for Amber Valley (Nigel Mills) for securing the debate and for his support of my campaign on hand hygiene. I also thank the hon. Member for Central Ayrshire (Dr Whitford) who, with the hon. Member for Wolverhampton North East (Emma Reynolds), worked with me on a cross-party campaign on hand hygiene. Recently, we got more than 50 MPs to sign up to it. I ask anyone present who has not signed up to join us, please. Hand hygiene is a bit of a personal crusade of mine. We simply cannot ignore the importance of hand hygiene in hospitals and the community. It is the single most effective, yet simple, way to prevent avoidable infections and so reduce the burden on the NHS.

I will talk a bit about my background and why I am such a fierce advocate of hand hygiene. My father, Clifford, was diagnosed with lung cancer in 2011; the prognosis was good, but he got fluid on his lungs and he went into hospital for a routine operation. The simple procedure should have taken about 20 minutes, but a junior doctor practised reinserting the lung drain with medical students for two hours. My father subsequently became infected with MRSA. What we saw in the hospital was shocking. One nurse walked in, put antibacterial cream on her hands, put something up my father’s nose and did not wash her hands. Basic things were not happening. I constantly observed a failure to follow basic hygiene procedures, which I mentioned to nurses at the time, but I was ignored and even rebuked. A few months later, in November 2011, he died from MRSA.

Afterwards I got in touch with MRSA Action UK, the charity, and became its regional representative. In Parliament, I set up an all-party group for patient safety for the Patients Association—I commend the Minister, the Secretary of State and the shadow Minister, the hon. Member for Ellesmere Port and Neston (Justin Madders), for supporting it. From my conversations with the Secretary of State and other Ministers, I know they are taking hand hygiene seriously and have plans to deal with it.

On areas for improvement, the World Health Organisation has taken a lead in establishing good practice in hand hygiene around the world, although through Dame Sally Davies, our chief medical officer, and the Prime Minister we have put the issue of antimicrobial resistance on to the global agenda. The WHO talks about the five moments for hand hygiene and identifies when medical workers should wash their hands, providing clear guidance that could make a real difference to hand hygiene routines. I commend the work done by everyone at the WHO.

In England, hand hygiene is most frequently monitored through direct observation—a member of the ward staff will take time to observe colleagues and their adherence to the five moments of hand hygiene. Such studies often produce incredibly high rates of compliance, nudging around 80% or 90%. That is because direct observation is ineffective. Only a minimum of 10 moments have to be observed, which on a busy ward is negligible. Furthermore, staff are aware that they are being monitored and will often change their behaviour—I know that from personal experience.

The APPG had an evidence session at which a lady from the Royal College of Nursing was present. I asked her a simple question—whether she had ever disciplined anyone or taken any of her nursing staff to one side to discipline them on lack of hand hygiene. The answer was no. That was in a 20-year career. We need to ensure a place of consequence if hand-washing is not adhered to.

The hon. Member for Amber Valley and I were presented with some startling statistics at a recent meeting with the Deb Group, which kindly sponsored our cross-party Handz campaign. They included registered rates of hand hygiene compliance as low as 20% to 40% in hospitals in which Deb systems were installed. Such figures are common to other companies offering a similar service in the healthcare sector. We cannot ignore the fact that, although the hospital statistics show a high rate of compliance with the five moments, in reality it is not always the case.

We need to implement a new system for proper observation and monitoring, hand in hand—excuse the pun—with proper awareness of the risks of poor hand hygiene. The hon. Member for Central Ayrshire has told me a lot about the fantastic work being done in NHS Scotland, educating the public with a proactive campaign of posters and information.

[Douglas Chapman (Dunfermline and West Fife) (SNP)]

As the hon. Member for Bridgend (Mrs Moon) has suggested, there are simple ways in which to improve hand hygiene. Recently, when visiting a school, I noticed that children were washing their hands to the two verses of “Happy Birthday to You”, which seemed to be going down well and was doing the trick. Does the hon. Lady accept that that is a good way of introducing children to hand hygiene at an early age? It is cost-effective, simple, memorable and starts the hand hygiene routine at a very early age.

[Andrea Jenkyns]

I thank the hon. Gentleman for making that point. With MRSA Action, the charity that I am involved with, I have been going into schools and we use that technique of singing “Happy Birthday” twice. The Handz campaign with the hon. Members for Central Ayrshire and for Wolverhampton North East is about education in schools and promoting hand hygiene from a young age. It is a year-long campaign running through to October and we are also going to go into care homes—there was a recent Westminster Hall debate on care homes—to emphasise the importance of good hand hygiene with the vulnerable in care homes.

Going back to what I was saying, hospitals in Scotland are covered in reminders for people to wash their hands and about the risks brought on to the ward if they do not. I am sure that the hon. Member for Central Ayrshire will mention this herself, but, in Scottish hospitals, people observe staff members when the staff members do not know they are being observed, which is a much better system than the one we use.

To sum up, we need to do a number of different things to improve hand hygiene compliance. First, we need to improve observation and reporting of hand-hygiene breaches so that we can get real and effective reports on compliance. As I said earlier, we need a place of consequence when that does not happen.

Secondly, we need to make it clearer to patients and staff when a ward is not hitting its compliance targets. NHS staff strive for brilliance and we thank them for their hard work, but we need to ensure that they are aware of areas in which they need to improve.

Thirdly, we need to ensure that people are properly aware of the risks of poor hand hygiene compliance in hospitals and elsewhere. Those achievable aims would make a real difference. The hon. Members for Wolverhampton North East, for Central Ayrshire and I are working hard to increase awareness through the Handz campaign and are planning further events.

Hand hygiene goes beyond people catching infections in hospital. More infections means that more antibiotics are needed for treatment, which leads to antimicrobial resistance, which is a huge global threat. Dame Sally Davies, our chief medical officer, has been an advocate on that issue and supported our campaign.

Hand hygiene is incredibly important. I reiterate my thanks to my hon. Friend the Member for Amber Valley for securing the debate, which will make a valuable contribution to discussions on the subject. The UK already leads the fight and it is great to see so many colleagues from the Government and other parties with such great enthusiasm for the subject.

--- Later in debate ---

[Ben Gummer]

I take the hon. Lady’s point, and I agree that we have to re-educate the public that we have not won the battle and that we have to re-engage. I will take her comments to the chief medical officer and talk to her about what more we can do to re-engage the public in the debate on hospital-acquired infections.

[Douglas Chapman]

My hon. Friend the Member for Central Ayrshire (Dr Whitford) has outlined some of the initiatives taken by the Scottish Government and the NHS in Scotland. Despite those measures, hospital-acquired infections in Scotland still cost the NHS £183 million a year. If we managed to reduce those infections by 20%, that would give us a saving of £36 million. A 40% reduction would give us £73 million. Does the Minister agree that there is a huge financial incentive to reducing the infection figures as much as we can, especially in these times of public spending restraint?

[Ben Gummer]

The finances follow the far bigger win, which is the benefit to patients and the saving of lives.

One further thing that I will attack quickly is compliance monitoring. It is a very interesting area, and I would encourage local trusts to look at it in detail. The CQC has it as one of its main targets and, in the new inspection round, which will come very soon, it will want to look at the area as a central part of its monitoring.