Only a few days to go: We’re raising £25,000 to keep TheyWorkForYou running and make sure people across the UK can hold their elected representatives to account.

Donate to our crowdfunder

Support for Life-shortening Conditions — [Andrew Percy in the Chair]

Part of the debate – in Westminster Hall at 9:56 am on 7th June 2016.

Alert me about debates like this

Photo of Rebecca Harris Rebecca Harris Conservative, Castle Point 9:56 am, 7th June 2016

I congratulate my hon. Friend Stuart Andrew on instigating this debate. Life-shortening illness is an issue that many hon. Friends will have experience of from their surgeries; it is invariably moving and humbling.

I felt driven to speak in this debate because of a constituent of mine, a truly inspirational young woman called Lucy Watts. Lucy is 22 and suffers from a rare genetic condition called Ehlers-Danlos syndrome—I hope that I have pronounced it correctly—with life-limiting complications. It has left her disabled and wheelchair-bound since she was 14. She is hooked up to intravenous drips almost 24 hours a day and is largely bed-bound.

Nevertheless, Lucy does not allow her illness to rule her. She is a writer, a speaker, a charity ambassador and trustee, a blogger, a patient-leader and a spokesperson. She has appeared in filmed and recorded work, including on TV and the radio, campaigning for young people with life-limiting disease. Lucy was awarded an MBE by Her Majesty in the new year honours list—all this at 22, and with a life-shortening illness. Those are achievements that many of us could not hope to realise in an entire lifetime. I am immensely proud of Lucy, and I urge hon. Members to take time to visit her amazing website, “Lucy’s Light”.

As chair of the all-party parliamentary group on brain tumours, I know too well the dreadful impact of severe illness on younger people and their loved ones, as brain tumours are the largest cancer killer of children and young people under 40. Only a few weeks ago, we had a debate in this Chamber highlighting the impact of brain tumours and the fact that they receive only about 2% of research spending, despite their effect on reducing lifespans.

Through Lucy, I have also been introduced to the work of the charity Together for Short Lives. As has been said, the charity does incredible work with young people such as Lucy who are diagnosed with life-threatening illnesses. Unfortunately but understandably, our society often feels uncomfortable discussing sick and dying children. Of course it is uncomfortable; as a mother, I can think of no greater horror. We would like to brush it aside and not focus on it, but we cannot afford to ignore the topic. My parents lost an older brother of mine, so I know some of the impact of being with and losing a sick child. It lasts a lifetime, and it affects the whole family.

Lucy has been keen to make it clear to me that young people desperately need care packages that bring together all three services—health, social care and education—in an age-appropriate way. I am glad to see that we are making some steps towards reforming the health and social care mix in this country, but much more needs to be done, and much faster.

A recent study suggests that the figure of 49,000 children and young people across the UK with life-shortening conditions could be underestimated by as much as 50%. The current population is not being adequately recognised, supported and funded by local authorities and clinical commissioning groups. The research suggests that a further 25,000 children and young people are effectively being ignored. In addition, that is reflected in the policy environment, where too often children’s palliative care needs are inappropriately coupled with those of adults. Children’s needs are much more complex, and must focus on quality of life as well as quality of death.

As we know, two weeks ago it was hospice week. Hospices are lifelines for families such as the Watts family. The work of hospices, such as Little Havens hospice in Daws Heath in my constituency, is invaluable for those who need support and advice. However, as Lucy has found, a children’s hospice such as Little Havens is not geared up to support a young adult and nor is the local adult hospice, meaning that Lucy is forced to travel from Essex as far as Winchester, despite the complications and difficulties of her illness, to access age-appropriate hospice care. That cannot be right.

I am proud that the Conservative-led Government ensured that there was a £60 million boost for hospice care and I hope that hospice care will continue to receive the vital funding it requires. As I have said, hospices really are a lifeline for families during the most heart-breaking of times. However, we must do more to support hospices such as Little Havens. The cost of palliative care for children is estimated to be £200 million a year and yet the grant for these services is just £11 million a year.

We owe it to Lucy and to thousands of other young people in similar situations to face up to the issue and not only see that that grant is increased but ensure that research funding is directed more towards the illnesses that impact on the young and that take away the greatest number of years from young people’s lives. Too often, we see research funding and care funding being focused on the most common illnesses, which are often less complex and have fewer implications for life expectancy. We have not got our focus right in this area and we need to adjust it.

It is very encouraging to see so many hon. Members here in Westminster Hall today and I look forward to working with the Government to ensure that we provide much more age-appropriate care for young people with complicated illnesses.