(6 years, 8 months ago)
Commons ChamberI rise today to talk about some very special people with an Ilford North connection. Perhaps even more impressive than crossing the party political divide in this debate, Tessa Jowell crosses an even greater political divide in London— the River Thames. I say respectfully to my hon. Friend the Member for Dulwich and West Norwood (Helen Hayes) and her constituents that we actually had Tessa first, because, in 1978, a fresh-faced Tessa Jowell embarked on a by-election campaign there. She was defeated, obviously, by the great tides of national politics of the day but, undeterred, she persisted in 1979.
What was so remarkable when I shared the video of Tessa Jowell speaking in the House of Lords in that powerful debate on cancer was just how many of my constituents responded, not just with great love and affection, but with strong memories of meeting Tessa during that by-election 40 years ago. That speaks so strongly of the warmth, empathy and infectious personality that Tessa has brought to her politics. As so many people have said, that certainly made its mark in so many ways on public policy in this country, but anyone who has ever met Tessa has been personally affected by her, and that is why we are all here today, determined to carry forward her legacy in such an important area.
I also want to talk about my constituent Kaleigh Lau. Today is a very special day for Kaleigh and her family—her father Scott, her mum Yang and her brother Carson. Two years ago today, Kaleigh was diagnosed with a diffuse intrinsic pontine glioma, or DIPG, which is a brain tumour located in the pons of the brainstem, for which there is currently no cure. At the time, Kaleigh and her family were told that life expectancy with DIPG was just nine months and that they should focus on making memories. Well, last month, Kaleigh celebrated her eighth birthday, and two years on from that awful day Kaleigh, her family and her huge band of friends and supporters are determined to make history, not memories, as they battle to defeat DIPG.
Their journey during the past two years has not been easy. I have followed the family through their tremendous ups and downs: the 30 radiotherapy sessions that young Kaleigh experienced between April and June 2016; that awful moment in December that year when Kaleigh was in progression, eight months in; the closeness with which Kaleigh almost got on to the convection enhanced delivery treatment programme through the compassionate treatment route, only to be told at the eleventh hour that the tumour had spread and CED would no longer be possible; the 10 more radiotherapy sessions that she underwent in January and February 2017; and the moment when Kaleigh’s condition declined to such an extent that the family took her on what they thought would be her last holiday, in March 2017.
Today is also an important day for the family because things changed a year ago today when Kaleigh began experimental treatment in Mexico. By her second treatment, she had regained all her functions. Five other UK families followed her to Mexico. Kaleigh was the first European to receive this treatment. More than 50 people around the world have now undergone the same treatment. None of this has been easy and we do not yet know whether this experimental treatment will be successful, but we know one thing for sure: if Kaleigh had stayed in the UK, she would not be with us today.
Kaleigh’s family have spent over £250,000 to fund her treatment so far, and her ongoing treatment costs them £15,000 every four to six weeks. I pay tribute to Kaleigh’s remarkably resilient family, particularly her father Scott, with whom I speak regularly. Scott has a full-time job and is a full-time dad. He is an utterly selfless human being, to such an extent that every time I call him back, without fail his first words are always, “Thanks for calling. I know you must be busy.” I am nowhere near as busy as Scott is, as a father trying to look after and care for his family on top of everything else that they are dealing with. This is why I address my remarks to Ministers.
I thank successive Ministers—most recently Lord O’Shaughnessy—for engaging with Kaleigh’s case, but they will understand the family’s frustration. After three meetings with the Department of Health, two online petition campaigns and a huge fundraising effort to pay for Kaleigh’s treatment, they do not feel that things are really moving forwards. As Scott says:
“How is the UK government going to help Kaleigh now? Not in the future, but now? Without funding we have no treatment. Overnight we have been forced to become an expert on DIPG, a carer, a fundraiser, a counsellor, an adviser, a leader, a beggar. But ultimately we need help from our government to take the burden off us so that we can focus on Kaleigh.”
There are just a few things that I want to say to Ministers in the short time I have left. We need to become a global leader in tackling DIPG, which has already taken over 200,000 children. We can do this through research, spearheading clinical trials and ensuring earlier access to treatment. We need to do more to ensure financial support to access experimental treatment. I understand the ethical dilemmas, particularly where experimental treatment is concerned, but we have to place greater trust in patients and parents who are willing to take risks.
I am sure that everyone in the House is paying rapt attention to my hon. Friend’s explanation of Kaleigh’s care and determination, and that of her family. Will he conclude the story and tell us what is going on at the moment?
I am so grateful to my hon. Friend for that additional time.
If Ministers cannot fund treatment, let us at least look at funding the flights, accommodation and all the additional costs that families face. It was remarkable listening to the comparison between what Tessa has been through and what Kaleigh’s family have been through in this respect. We need better care plans, advice and guidance. Scott has to do it all himself, to such an extent that he has become an adviser to families around the world on top of looking after his own children. We need to do a lot more to ensure consistency.