Children with Life-limiting Conditions

Nadine Dorries Excerpts

Tuesday 29th January 2019 Westminster Hall

[Several hon. Members rose—]

[Ms Nadine Dorries (in the Chair)]

I will impose an informal five-minute limit on speeches. Obviously, if Members go over the informal limit, I will have to impose a formal four or three-minute limit, so if everybody would realise that and be courteous, that would be great.

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[Fiona Bruce (Congleton) (Con)]

It is humbling to follow the hon. Member for Swansea East (Carolyn Harris). I want to put on record my respect for her campaigning on this and other issues, and for my constituency neighbour and hon. Friend the Member for Eddisbury (Antoinette Sandbach).

I commend the work of the Donna Louise Children’s Hospice in Stoke-on-Trent, which provides children’s and young people’s hospice services across Staffordshire and south-east Cheshire. It has written to me this week—given that time is short, I will pass the Minister a copy of the letter after the debate. It talks about the quality of palliative care as patchy:

“The way in which NHS CCGs and local authorities plan, fund and monitor children’s palliative care in hospitals, children’s hospices and the community represents”—

as we have heard—

“a postcode lottery. Staffordshire has no coherent plan and this is reflected in the poor financial support the Hospice receives from local commissioners. Donna Louise receives 8.9% of its income from the NHS”.

The hospice calls on the Government and NHS England

“to consider appropriate mechanisms to bridge the children’s palliative care accountability gap.”

I want to spend most of my speech talking about an issue that I know is uncomfortable for some people to hear about. For that reason, I am delighted that you are in the Chair, Ms Dorries, because you have spoken about this issue on a number of occasions. Many families face a difficult decision when a child in the womb is diagnosed with a life-limiting or life-threatening condition. This is not a small issue: in 2017 there were a total of 3,314 ground E abortions on the grounds that the child was diagnosed with a substantial risk that, if born, they would suffer from physical or mental abnormalities, such as being seriously handicapped. Parents have to make really agonising decisions.

A few years ago, I held an inquiry in this place on the difficult situations that parents face when their child is diagnosed in this way and they have to consider an abortion. We took evidence from dozens of witnesses. Some had come under huge pressure to have an abortion, and the support they were given to consider keeping their baby was very limited. Many told us that they were steered towards an abortion, and they felt like the medical profession was irritated by them. Many felt like they were given no information on the support they might get; often the best information they got was through contacting charities, which could put them in touch with parents who were bringing up children—often very successfully. Those children brought great joy to their families, but the medical professionals did not give the families the information they needed to make a decision that was right for them. Some told us that all they received was a leaflet telling them how to have an abortion. The mothers who had kept their children, even if it was for a very short time, felt like they could grieve and care for their children in a way they had not been able to do otherwise. One mother had to have an abortion with her first baby and then decided she would keep the second, even though she knew the condition was life-limiting. She felt like there was a much better outcome for her and her family’s going through the grieving process.

The inquiry made a series of recommendations—I will pass a copy to the Minister because time is very short. I hope she will consider them and respond to me. Many people generally find this issue a very difficult one to address, as do—I am sorry to say—Ministers. Many of the recommendations in that report, which was published a few years ago, are still valid today. We recommended that guidelines for the medical profession should include training for obstetricians, foetal medicine specialists and midwives on the practical realities of the lives of children who have such conditions, so that they can better advise parents and give them better information when they make this difficult decision. One parent summarised what many others reported:

“Guidelines and standards need to be set in place”

so that all hospitals can meet a certain standard. Can the Minister assure me that she will look at our report and perhaps produce guidance to ensure that all mothers feel like they can make a genuinely informed decision when they are carrying a baby with a life-limiting condition? Does she agree that we ought to provide much better information, so that parents in such circumstances can make an informed choice?

[Ms Nadine Dorries (in the Chair)]

I am afraid that I will now have to put a formal time limit of four minutes on Back-Bench speeches.

--- Later in debate ---

[Julie Cooper]

I totally agree, and I will come to that point in a moment.

The average NHS contribution to children’s hospices is only 9%. Recent additional costs relating to the implementation of the NHS staff pay award and extra pension costs have pushed many hospices into a dire financial position, with closure a real possibility. Where hospices are forced to close, the NHS is left to fund the entire cost of health and social care for those children and young people.

In that context, the announcement by NHS England in December of £25 million of extra funding for children’s hospices was extremely welcome. However, children’s hospices do not know how to access that extra funding. Derian House Children’s Hospice in Chorley, which currently supports 12 families from my constituency, told me this week that there is no clarity about how that newly committed funding can be accessed. As many Members mentioned, since the publication of the NHS 10-year plan there has been confusion about what exactly has been promised.

The Minister will be aware that the 10-year plan promises that, over the next five years,

“NHS England will increase its contribution by match-funding clinical commissioning groups (CCGs) who commit to increase their investment in local children’s palliative and end of life care services including children’s hospices.”

Does she agree that that is confusing, and will she clarify the following points? Will the £25 million promised in December be only for children’s hospices or for a wider group of children’s palliative care services? Can she guarantee that, as a result of the long-term plan, the £11 million children’s hospice grant will be protected and increased to reflect the growing demand and complexity of care provided by those lifeline services? The total spend on children’s palliative care in hospices, hospitals and the community currently exceeds £25 million, so the promised funding could be viewed—I am sure this is unintentional—as a cap on NHS spending on children’s palliative care. In the light of that, can she reassure me that the NHS will indeed provide additional funding for children’s hospices?

I turn briefly to the financial pressures that parents of children with seriously ill children often experience. The 2018 “Counting the cost” survey of families who provide long-term care for a disabled child found that many experienced huge financial difficulties. A third of all families surveyed said they had additional costs of more than £300 each month. Some 46% of families had been threatened with court action for non-payment of bills. That is hardly surprising given that 87% of the families surveyed were unable to work because of their caring commitments.

CLIC Sargent has highlighted that children suffering with cancer often have to travel longer distances than adult patients for regular treatments, placing a significant additional financial burden on parents already coping with so much. Will the Minister commit to introducing a package of financial support that includes a children and young people’s cancer travel fund for parents who care for children with life-threatening diseases? Will she also spare a thought for bereaved parents and accelerate the introduction of the children’s funeral fund that so many Members have requested?

In conclusion, I ask that the Minister answers the specific points that I and other hon. Members have raised, and commits to implementing a comprehensive strategy that provides a consistent standard of joined-up, adequately funded children’s palliative care that has full parity with adult care.

[Ms Nadine Dorries (in the Chair)]

Minister, will you leave one minute at the end for Mr Shannon to wind up?