Thursday 19th April 2018

(5 years, 11 months ago)

Commons Chamber
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Heidi Alexander Portrait Heidi Alexander (Lewisham East) (Lab)
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It is a genuine privilege to speak in this debate, and I congratulate my hon. Friend the hon. Member for Croydon Central (Sarah Jones) and the right hon. Member for Old Bexley and Sidcup (James Brokenshire) on securing it. It is entirely appropriate that this debate has been led by two south London MPs. As a fellow south Londoner, may I start by saying what a special place in our heart is occupied by the very noble Baroness Jowell? There are some people we meet in life who radiate positivity, and Tessa is one of them. She has a lightness of step but a firmness of view that is a formidable combination; there was no way those Olympics in 2012 were going anywhere but London! It is right and proper that this House has the chance to debate her latest and perhaps most important campaign: the need to increase research on, and improve outcomes for, individuals diagnosed with brain cancer. The figures on research funding, and the availability of effective drugs and treatment, speak for themselves, and I will not repeat them, as I know time is short.

Last year, I lost two people close to me to cancer. One was my father-in-law, Nigel Ballantyne. I hesitate to say what I am about to say, as I have questioned whether my own grief has skewed my perceptions of the care that he received. I do not think it has. I also hesitate because I wonder whether today is the appropriate time to raise these issues, but I have concluded that Tessa would not want me to pull any punches.

My father-in-law was told that he had lung cancer when he was on his own, in a hospital bed, with only his mobile phone for company. There were complicating circumstances, but there were no excuses. He had struggled to get an appointment to see his own GP and had been passed from pillar to post for months—a situation admittedly not made better by the usual reticence of a 76-year-old man not wanting to cause a fuss, and his understandable desire to go on that holiday that he had been looking forward to. Having said that, the delay in his diagnosis and the way his diagnosis was delivered were unacceptable. He died six days before the general election last year.

Five months later, a good friend died at home after a long struggle. His wife speaks of how she had to fight tooth and nail to get palliative care support in place on the night he died. She described to me a ward that lacked sufficient nursing staff to administer injections without her physical help.

When the national cancer strategy talks about placing patient experience on a par with clinical outcomes and quality of life, it rings a bit hollow to me. I do not want to sound overly bleak, as I know that there are many wonderful examples of good care with positive outcomes, but we do need to be honest. We need to ask ourselves tough questions about how patients are treated on all steps of the care pathway.

Those living with cancer also need more support. Last Friday, my constituent, Amanda Mahoney, whose breast cancer has recurred four times in seven years, came to my advice surgery to ask me to campaign alongside her to change the face of cancer. She said:

“We’re not all bald, we’re not all having chemo. I don’t want to be told ‘sit on a park bench and wait till it gets you.’”

She wants to continue doing the job she loves—she is an outreach worker with autistic children—but her recurring experience has been employer after employer who does not know what to do and a benefits system that seems to make things harder, not easier.

This issue is not going away. This debate is the product of Tessa’s campaigning. She has been able to do what she does best—make her contribution by making those in power sit up and listen. She has been able to continue her working life. Others should be able to do the same, if that is what they want, and employers should be supported to make that happen.

There is so much more that needs to be said, but in the time available it is impossible to do this subject justice, so I will touch on just one other issue, which I know is also close to Tessa’s heart: our impending departure from the EU, which includes our probable departure from the European Medicines Agency and Euratom. Promises were made about extra cash for the NHS after Brexit, but, in stark contrast, Brexit has potentially huge negative implications for cancer research and treatment. We need urgent answers.

The continued ability of British cancer sufferers to participate in pan-European clinical trials is critical, especially for those with rarer cancers. We must ensure that we have a reliable supply of medical isotopes for diagnostics and treatments—that supply is at risk as we leave Euratom. We must not become a second-tier country for access to the newest and the best medicines. The next generation of immunotherapies holds great potential. We cannot willingly put ourselves at the back of the queue.

There are not yet answers to those questions, nor are there answers to the chronic NHS staffing crisis, which is exacerbated by Brexit, yet we are 11 months from leaving. We need a global, cross-border approach to research. We need to be a country that is open to talent and ideas from around the world. We need a properly resourced, adequately staffed NHS that is capable of embracing innovation.

Wes Streeting Portrait Wes Streeting (Ilford North) (Lab)
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Will my hon. Friend give way?

Heidi Alexander Portrait Heidi Alexander
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I am drawing my remarks to a close.

It saddens me that we seem a long way from that aspiration, but if we are to honour the work of people such as Tessa and the memory of people such as my father-in-law, it has to be worth fighting for.

--- Later in debate ---
Wes Streeting Portrait Wes Streeting (Ilford North) (Lab)
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I 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.

Siobhain McDonagh Portrait Siobhain McDonagh (Mitcham and Morden) (Lab)
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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?

Wes Streeting Portrait Wes Streeting
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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.

Caroline Flint Portrait Caroline Flint (Don Valley) (Lab)
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My hon. Friend is coming up with some practical suggestions and creative ways of supporting such families. Does he agree that it is important that the NHS thinks sensitively and creatively about how it can support aftercare once Kaleigh and her family come home?

Wes Streeting Portrait Wes Streeting
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That is absolutely right. I pay tribute to Great Ormond Street Hospital and other great NHS services that have supported the family.

As my hon. Friend the Member for Croydon Central (Sarah Jones) said when she opened the debate, we have all been affected by cancer in some way. The worst experience of my life was losing my nan to cancer when I was aged 10. It is a great source of regret to me that I do not still have that great left-wing firebrand who occupied County Hall when Mrs Thatcher decided to shut it down, and allegedly threw a brick at the trucks as they rolled into Wapping. Some of that has rubbed off on me.

I hope that, in looking at what we can practically do to support families, Ministers have heard the powerful contributions made today. I want to say to Kaleigh’s family, to Tessa, and to other families who have been affected by childhood brain tumours that their strength, their courage and their resilience, but most remarkably of all, their enormous generosity of spirit in seeking to help others while they go through an enormous struggle themselves should be an example to us all. Tessa, that is the example that we are following today, and we are determined to make sure that our country gets this right for you.