Children with Life-limiting Conditions

Lyn Brown Excerpts

Tuesday 29th January 2019 Westminster Hall

[Lyn Brown (West Ham) (Lab)]

I am grateful to you, Ms Dorries, for calling me to speak, and to the hon. Member for Strangford (Jim Shannon) for giving me the opportunity to raise an urgent case.

My constituent, Shakil Malji, has a daughter, Maryam, who is five months old and a beautiful, engaging child. Recently, Maryam was diagnosed with a terrible condition called spinal muscular atrophy, type 1. The effects of SMA1 if left untreated are horrific. The disease causes muscles to waste away even before they can properly develop. It reduces and then takes away the ability to do basic things unassisted, including walking, crawling, sitting, eating, drinking and breathing.

Maryam’s family are devastated—of course they are. However, an effective treatment developed by international drug company Biogen—remember that name—does exist: a new drug called Spinraza. Clinical trials, which ended more than two years ago in 2016, showed that Spinraza is effective and can provide a lifeline—a longer life and less suffering; what else is medicine about? Spinraza is available on the NHS in Scotland and in 23 other European countries. It is licensed for use in the UK, but it is not available to Maryam because Biogen and NICE have not yet reached an agreement, and because last November Biogen’s extended access programme was closed; I have been told repeatedly that it will not reopen. To date, 220,000 people have signed a petition about ensuring that all children with SMA get access to Spinraza through the NHS. I have written to the Secretary of State to encourage him to intervene. The NICE approval process is taking far too long.

I am here to talk about Maryam, however, and to argue that Biogen has a special and moral responsibility to ensure that she receives the care she needs. SMA is genetic and Abdullah, Shakil’s son, was also diagnosed when he was very young. Shakil was offered access to Spinraza for Abdullah as part of the clinical trial. That trial was successful and led to Biogen being able to sell the drug. Abdullah, unfortunately, was still very weak from his condition, and he died in 2015. But Maryam could have that drug now, soon after diagnosis, which would bring the family hope again.

Shakil feels that his family have been used. His son helped to test the drug but it is now being denied to Abdullah’s sister. Biogen offers to work with NICE towards what it calls a “bridging solution”, if and when NICE commits to a permanent agreement to pay for SMA patients to access Spinraza. Shakil and I have been encouraged by Biogen to campaign for that, even as the weeks pass and as Maryam inevitably gets weaker.

I call those tactics heartless. In effect, Biogen’s approach is to hold a baby’s life in its hands and to ask a still grieving family to use their child to get the deal that the company wants with NICE. Shakil and his family have suffered so much, and Maryam needs Spinraza as soon as possible. I will not let the Government or NICE off the hook on this one, and I would like to meet the Department. Biogen, however, needs to step up now to offer a way forward for Maryam—she cannot wait. Biogen, do the decent thing!

--- Later in debate ---

[The Minister for Care (Caroline Dinenage)]

Of course, Ms Dorries. It is a great pleasure to serve under your chairmanship. I congratulate the hon. Member for Strangford (Jim Shannon) on securing the debate and on his enduring and passionate commitment to this incredibly important cause.

We heard incredibly powerful speeches from both sides of the Chamber, with lots of great examples of amazing practice in different regions. Some worrying issues were mentioned; I thank the hon. Members for West Ham (Lyn Brown) and for North Tyneside (Mary Glindon) for raising the issue of the life-saving drug that they are keen to get hold of for their constituents. I will of course commit to looking at that with the Secretary of State, but I share the concern of the hon. Member for West Ham that children should never be used as pawns in communications between drug companies and Government organisations.

[Lyn Brown]

May I just press the Minister to agree to the urgent meeting I requested?

[Caroline Dinenage]

Absolutely. The meeting probably would not be with me, because the issue does not fall under my portfolio, but it is really important that the hon. Lady meets the relevant Minister.

The debate has been very broad, and a lot of questions were asked. I will attempt to answer as many as I can, but I commit to writing to hon. Members with all the answers they asked for if I miss any out. Whenever we discuss this issue, we must keep at the back of our minds the powerful point made by the hon. Member for East Kilbride, Strathaven and Lesmahagow (Dr Cameron), despite her throat issues, that at a time of their lives when they are dealing with unimaginable stress and grief, parents should not have to fight for what they need to best care for their children.

The hon. Member for Swansea East (Carolyn Harris) painted a picture of how the world ends when you lose a child. I cannot even begin to imagine that, but it must feel the same to be told that your child may die at a young age. That must, quite simply, be devastating. As the hon. Member for Strangford said, almost 40,000 children and young people aged 19 or under in England live with a life-limiting condition and may need palliative care. Of those, around 1,000 die every year.

As outlined in the NHS long-term plan, we know that children’s palliative and end of life care have not kept pace with the growth in clinical care costs or with inflation. NHS England’s hospice grant programme provides £11 million a year for children’s hospices, which are incredibly valuable. I have spoken before—probably in this room—about my great passion for children’s hospices. That comes from my mum who helped raise money to build Naomi House children’s hospice just outside Winchester, and throughout my twenties she made the whole family partake in a range of humiliating fundraising exercises to raise money for that. I went to visit Naomi House again last year, many years later, and I saw at first hand the incredible, valuable services that it offers, not just for end of life care, but because of its respite and outreach work, which is a lifeline for so many families.

Hon. Members will know the invaluable services offered by children’s hospices, and I was pleased that in the long-term plan additional funding has been made available each year for children’s palliative and end of life care services. I understand the confusion about the different amounts that have been mentioned and issues around that, and Department officials are currently working with NHS England to clarify those numbers and what they mean. I am clear that funding for children’s hospices is vital. We must ensure they get the money they need, and that money must increase from its current levels.

As the hon. Member for Strangford pointed out, there is regional variation in how palliative care is delivered. I know that such care is exceptional in some parts of the country, and many staff up and down the country go above and beyond to ensure that experiences for children with life-limiting conditions, and those at the end of their life, are as good as they can be. We know, however, that there are areas where we need to do considerably more, and NHS England is firmly focused on providing support and challenge to achieve that. Choice at the end of life is a centrepiece of the Government’s drive to improve end of life care, and for choice to be meaningful it needs to be personalised and matched by healthcare services that respond in an effective way that places patients, families and carers at the heart of decision making. We know when we achieve that that we have got it right, but also that we have a long way to go. I pay tribute to the all-party group for children who need palliative care, and charities such as Together for Short Lives, and the work they are doing to take that crusade forward.