Children with Life-limiting Conditions

Lisa Cameron Excerpts

Tuesday 29th January 2019 Westminster Hall

[Dr Lisa Cameron (East Kilbride, Strathaven and Lesmahagow) (SNP)]

It is a pleasure to serve under your chairmanship, Ms Dorries. I thank everyone who has taken part in this extremely important debate. It is an absolute pleasure to follow the hon. Member for North Tyneside (Mary Glindon), who raised the issue of Spinraza, and the hon. Member for West Ham (Lyn Brown), who spoke about her constituent Maryam and about why this issue must be taken forward by the UK Government. I hope the Minister will agree with her.

I thank the hon. Member for Strangford (Jim Shannon) for securing this important debate and for speaking so passionately. Week in, week out in the House of Commons he champions the most vulnerable in our society. He gave a poignant speech to support children with life-threatening conditions. By securing this debate, he has let us all speak about the important issues raised by those conditions and the charities that do such excellent work, including Together for Short Lives, the Rainbow Trust, the Children’s Hospices Across Scotland at Robin House and CLIC Sargent, to name just a few. I also thank the Backbench Business Committee; I was extremely pleased to be part of the cross-party group that requested the debate. I have chaired the all-party parliamentary group for disability since 2015; we are working extremely hard on these issues, and I thank everyone involved in it.

I should like to mention my constituent Gary Butterworth of Westwood Golf Club, who, as well as playing lots of golf, has taken the time to raise more than £20,000 for Children’s Hospices Across Scotland. Every year I support the efforts of the club and Gary to fundraise; we will visit Robin House together later this year.

I also thank my constituent Lisa Quarrell, who has worked so hard over the past year not only to look after her six-year-old son Cole, who has experienced repeated epileptic seizures and whose health has deteriorated dramatically, but to try to access medicinal cannabis since the Home Secretary took up that issue. I hope the Minister will look at those issues very carefully, because the care pathways for families are not adequate. Lisa has battled day in, day out just to access the Home Secretary’s recommendations. Those families do not have the energy, in addition to caring for their children, to battle the system.

A number of issues have been raised in the debate. I want to stress the care and emotional and practical support that needs to be put in place for siblings. When a young child has a life-threatening or life-limiting condition, siblings often feel, not ignored, but not the focal point of the family’s daily life. There should be support for the whole family unit, and particularly for siblings. We heard about the need for family-friendly working policies and psychological support. I refer to my entry in the Register of Members’ Financial Interests, having worked as a psychologist.

Some remarkable speeches were made; I thank the hon. Member for Eddisbury (Antoinette Sandbach), who does such fantastic work in the all-party parliamentary group on baby loss, for raising the important issue of personal budget plans. Families should not have to think about finances at such a grave time in their lives. If I was wearing a hat, I would take it off to the hon. Member for Congleton (Fiona Bruce) for her excellent work in Parliament to strengthen families, provide support and raise issues that many find extremely difficult to broach. I hope the Minister looks very carefully at the hon. Lady’s recommendations.

My hon. Friend the Member for Glasgow East (David Linden) outlined the Scottish Government’s developments and funding for CHAS; I thank him for his work on those issues. The hon. Member for Swansea East (Carolyn Harris) spoke so poignantly that I was almost in tears while listening to her talk about the end of the world for individuals and their families. We must take that on board. I am sure the Minister heard those words clearly.

The hon. Member for Eastbourne (Stephen Lloyd) paid tribute to all his local hospices and spoke about the important issue of the number of consultants available. The Minister should look at that issue closely and meet the hon. Gentleman to discuss it. The hon. Member for Lewisham West and Penge (Ellie Reeves) spoke about the fantastic work of the specialist hospices in her constituency, and the need for funding to preserve and enhance that work. I thank the hon. Member for Newcastle upon Tyne North (Catherine McKinnell) for speaking about the importance of respite, which too often is forgotten about. Respite is not a dirty word; it is not about respite from your child but with your child, to enjoy them, to play with them and to do the natural things that families do.

I have a couple of questions for the Minister. Can she confirm that total NHS funding for children’s palliative care will not fall as a result of the long-term plan, and that children’s hospices will not receive less funding? Will she clarify whether the increase in funding from £11 million to £25 million is intended to be open to providers of emotional and practical support, alongside the hospices? If not, what will be provided to ensure that we have that emotional and practical support? What steps will the Minister take to encourage clinical commissioning groups and local authorities to increase commissioning for the sibling support that I mentioned?