Down Syndrome Bill

Charles Walker Excerpts

2nd reading
Friday 26th November 2021 Commons Chamber

[Sir Charles Walker (Broxbourne) (Con)]

Thank you, Mr Speaker, for making special provision for my guest today, who is up in the Public Gallery. Corina Gander and I met at 7.15 am in a very cold car park in Cuffley with our walking shoes. As you are aware, Mr Speaker, there are problems with transport today, so we arrived in Moorgate and then spent an hour in the rain getting here, but it is an important occasion and we both wanted to be here. Corina is the mother of Daisy. Daisy has Down’s syndrome, and she is going to be watching this with her mum later tonight on Parliament TV, as will Daisy’s four sisters and her proud grandparents.

I first met Corina nearly two years ago. She came to tell me, in no uncertain terms, that what was happening in Hertfordshire was not good enough; there was not enough support for her and her daughter. I did not know a huge amount about Down’s syndrome then—I know a lot more now—but I said to her, “So what are the problems?” My right hon. Friend the Member for North Somerset (Dr Fox) brilliantly identified them in his introductory speech.

“Fundamentally,” Corina said, “the illness is just not taken seriously. When my daughter was born, she had terrible breathing difficulties. I kept saying to the doctors, ‘My daughter is struggling with her breathing,’ and they said, ‘Well what do you expect, Corina? She has Down’s syndrome.’” Then, one day, a health visitor came who had a relationship with the family, and she said to Corina, a worried mother, “What would you do, Corina, if this was one of your four other daughters?” Corina said to the health visitor, “I’d take her to A&E.” The health visitor said, “Well you know what to do, then, don’t you? I’ll hold the baby; you get your coat. We’re going to A&E.” That child, Daisy, was on life support for a month and then spent another three months in hospital. That is the stigma that my right hon. Friend is trying to address today.

Beyond stigma, my right hon. Friend identified other areas that need to be addressed—fragmented services, for example. At the moment, services are almost always fragmented. A young child will need physiotherapy, which will be in one place. Occupational therapy will be in another place. Speech and language will be elsewhere. Community paediatricians will be in another place. Then there are opticians, audiology and so on. It can be exhausting to navigate specialist services, but particularly so when one has a child who is very demanding of one’s time and other family commitments. We need to make it easier for parents to get the support that they need and, most importantly, their children need.

[Ruth Jones]

The hon. Gentleman is making a powerful speech in support of the Bill. He highlights a very important point about the need for integrated children’s services. At Serennu children’s centre in my constituency, all the services are under one roof, including the voluntary sector, and it is a comfortable place for families to go to. Children are not scared and families are not anxious. Does he agree that that is the best way forward?

--- Later in debate ---

[Sir Charles Walker]

The hon. Lady—I think we are all hon. Friends today—anticipates the next part of my speech and I will not detain the House for too long.

Members of Parliament love to take credit for all the wonderful things they do, but I take no credit for this at all. This is entirely down to Corina. She said, “Right, Charles, you seem like a motivated, engaged individual. Let’s convene a meeting of all the people who matter to me and my daughter.” So we did that and I actually came up with a few names that were not on the list.

Who did we have on the list? We had the wonderful Alison Patrick, who is a fellow traveller and parent. We had an amazing man called Dr Nick Cholidis, who is Daisy’s consultant, because consultants need to be absolutely at the centre of this. We had the wonderful—and I do say wonderful—county councillor, Teresa Heritage, who is the cabinet member for children, young people and families. When we were travelling up on the train, Corina and I did say that she was a diamond. It is not often that we identify county councillors as a diamond, but she is a diamond and I hope she is listening. It is a function of modern politics that everybody has very, very long titles, so I do apologise. We also had Dr Jane Halpin, joint CEO of Hertfordshire and West Essex Integrated Care Systems and clinical commissioning groups. I must also give a special mention to Sally Orr of the CCG and Andy Lawrence, Hertfordshire County Council’s lead for social care.

Now, why are all those names important? Because the point of my right hon. Friend’s Bill is to bring services together and integrate them.

[Dr Fox]

I am very grateful to my hon. Friend for giving way. Everything he says is absolutely correct. Does that not have an added importance in an era of greater life expectancy, when we can no longer depend on parents taking those with Down’s syndrome to services? Those services must be able to be independently provided to those who need them, without the need for parents to be a part of the equation.

[Sir Charles Walker]

My right hon. Friend is so right. As a constituency MP—we are all constituency MPs first and foremost—like him, I have met parents in their 70s and 80s who are distraught and worried, as they know their time on this earth is coming to an end and they are so concerned about the welfare of the children they love. I expect all of us have seen that or will see that during our time in Parliament, and thanks to my right hon. Friend we can now begin to alleviate that grinding worry that parents have.

We convened that wonderful meeting and something amazing happened: we got a Down’s syndrome therapy advice clinic in Hertfordshire Community NHS Trust. We now have an integrated therapies advice clinic in place in Hertfordshire. It is only a pilot, but it is being run in the community hospital in Welwyn Garden City. It is in the constituency of my right hon. Friend the Member for Welwyn Hatfield (Grant Shapps), but I feel I can mention it because my constituents use it as well. I am so pleased that as a result of an intervention—as a result of parents wanting to get the very best for their children and engaging with a variety of service providers, as the hon. Member for Newport West (Ruth Jones) mentioned—we are actually making progress.

The Minister, in her wonderful “Dear colleague” letter, made it clear that there will be a consultation process. My right hon. Friend the Member for North Somerset is looking forward to that process because he wants to get more from Government, and who would dare to resist him in those demands and requests put so charmingly? I will participate in that, Corina will and many, many people in Hertfordshire will want to take part.

But Members of Parliament are very good at knowing best, and Corina, on the way in, said, “Charles, I’ve written you a little note in case you can’t think of what you want to say”. I am going to read her note word for word. It is 220 pages—no, 220 words; my speech was 220 pages. It will take one minute and then I will firmly sit down back in my seat, on my backside.

Corina said:

“Can you imagine being born a little different, just a little. Imagine with that difference comes challenges. Everything takes time. You have to work so much harder to reach the milestones but you do reach them it all just takes a little longer and a lot of determination. Yet with the support of Health services and local authorities your life is easy because you receive all the help available to enable you to achieve. Now imagine you have Down syndrome and being told because you look a little different those services are not available to you.

Accept your difference and just get on with it. A facial feature should never determine the care and support someone receives.

We are all born equal and a disability should never deprive anyone to a great quality of life.

Every child with Down syndrome will grow into a successful adult we just need our health services and local authorities to help parents in guiding them there.

Not much to ask really.

I can guarantee you that you will never meet a more stronger determined person than that of someone with that extra chromosome, but no one should need to get the strength and determination from having to fight everyday of their life.

Those battles need to end, parents need to be parents and we all need to recognise that having Down syndrome is really just being a little different.”

I thank my right hon. Friend for what he is doing today. He is an inspiration to 47,000 people and all their parents, and all of us.