Down Syndrome Bill

Lord Touhig Excerpts

2nd reading
Friday 18th March 2022 Lords Chamber

[Lord Touhig (Lab)]

My Lords, when opening Second Reading in the other place, Dr Liam Fox said that the first question that people have tended to ask about this Private Member’s Bill is “Why?” Why this issue, and why now? He gave three key reasons. First, he said that there is the challenge faced by those of our fellow citizens who have Down’s syndrome and their families. The second reason concerned the intellectual development of a person with Down’s syndrome—an area, he said, where public perception tends to be inaccurate. Thirdly, he said the Bill was timely as the life expectancy of a person with Down’s syndrome is now perhaps 58 years, compared with just 13 years some time ago.

It is more than 50 years since I first became aware of the challenges facing a person with Down’s syndrome and their family. We had just moved house and one of our neighbours had a son, David, with Down’s syndrome. We became friends, and in the next few months my late wife, Jennifer, became involved as a volunteer member of the local Mencap group. She helped to organise weekly gatherings of parents and children at the Glengariff day centre near our home. At first, she thought these evenings were just an opportunity for parents to have a cup of tea and a gossip while she and others organised events for the children; but she soon discovered that, for the parents, this was a time to share experiences and problems and give mutual support, which was otherwise lacking—a much-needed moment away from what appeared to be the pressure they lived with trying to raise a child with Down’s syndrome. She would often tell me about the challenges this or that parent had in gaining education support, welfare support and, yes, understanding and tolerance from others, including other family members and neighbours.

I know friends who became frustrated having to justify seeking support for their son with Down’s syndrome. They had to wait until he was seven to get him statemented. I discovered even more when, as a local councillor, I took up cases of parents with these problems. I would go into County Hall only to be told, “Sorry, Councillor, we can’t do anything; he”—or she—“falls through the net.” But who created the net? We did—we local councils created them, we the Government did, and we in Parliament had a hand in it too.

Many of the challenges that parents faced 50 years ago, when I first became aware of these matters, remain today. My wife went on to help set up a local Gateway club, visiting sixth forms recruiting youngsters to join in the support. It was at Gateway that I met Pat and her mother and father. Pat was a bright and cheerful girl, her parents doted on her, and she was always immaculately dressed and turned out. But when her father was taken seriously ill and her mother had problems managing, she went into local authority residential care. What a mistake. We met Pat wandering alone in Cwmbran town centre looking lost and dishevelled. Pat did not know the difference between 5p and £5, yet she was left without care and support. We were shocked but, thankfully, within a week her father had recovered, and she was back at home. But the experience of what we witnessed remained with us. The system—in this case, the local council—had let a vulnerable person down. She, again, had fallen through the net.

It was no better with care in the community. Cathy, a friend’s daughter with Down’s syndrome, was encouraged to experience independent living. She was placed in a house with two elderly men—both had dementia. One person came in the morning to make sure there was some breakfast; a second person came in the middle of the day to make sure there was a midday meal; and a third person came in the evening to see there was an evening meal. That was not care in the community; that was neglect in the community. Cathy was rescued—and I believe that, rescued—by her family within a week. Again, the system had failed a vulnerable person.

Several years later—it was during the Islwyn by-election—I was knocking on doors, and I came across a family. A family of four young women who had Down’s syndrome and they lived together as a family with a house mother. Now, that is real care in the community; that is doing it the right way.

Liam Fox’s second reason concerned perception and, having spent 27 years working in newspapers and publishing, I can tell you that in my experience perception is more real than fact in what most people believe to be the case than what actually is the case. The wrong perception about Down’s syndrome can also feed ignorance, prejudice and stupidity.

I found that was the case, even with the National Health Service. Some years ago, I served as chair of the All-Party Parliamentary Group on Down Syndrome. I listened in shock to a mother who related her experience of ignorance. She was at the bedside of her young son who was recovering post-op from minor heart surgery. The child appeared distressed, and she became alarmed, and she called the nurse, and the nurse came and looked and told her, “Don’t worry, dear. He is Downs, and they do not feel pain.” Do not feel pain!

Our committee then went on to take further evidence from a young couple. The wife had just given birth to a child with Down’s syndrome, and they were not aware that this was going to happen so they were coming to terms and trying to work out how they would come together and work as a family, and in breezed a doctor. When they spoke about their concerns, and said they were not certain what to do, the doctor told them not to worry, to leave that one here and go home and have another one—ignorance, prejudice and sheer bloody stupidity, all rolled into one.

Finally, Liam Fox’s third reason for introducing this Bill was that it was timely and necessary, pointing out that, in his lifetime, life expectancy for people with Down’s syndrome had increased from 13 years to 58. Timely is right—right in that, no matter how long or how short out lifespan, all have the right to quality of life. Who in this Chamber would deny that? We want it for ourselves—we do. Do we not want it for our children? Of course, we do. This Bill is another step, another building-block, in ensuring a person with Down’s syndrome has just that: quality of life, a life lived to the full in dignity and respect, respect for their human rights. The human rights of a person with Down’s syndrome are no less important than yours or mine. Their lives deserve to be lived, respected, honoured, defended and yes, indeed, cherished by all of us.