Hosted by former Martin House Children’s Hospice fundraising manager Stuart Andrew (Conservative MP for Pudsey), our ‘Care Around the Clock’ reception was an important opportunity for our sector to ask parliamentarians to press ministers and local health and social care organisations. All have an important role in overcoming the workforce, planning and funding barriers which are preventing children with life-limiting conditions from being able to access care at or close to home at evenings and weekends.
MPs and peers – including Work and Pensions Secretary Iain Duncan Smith MP – heard a speech from parent carer Lizzie Hornby. Lizzie, mother to William, a boy living with Edward’s Syndrome, powerfully described the impact that her son’s life-limiting condition has on him and her family. She told guests how many professionals and services she needs to co-ordinate just when William is well – and how hospital is the only realistic option if William is unwell or if his equipment fails.
Young people with life-limiting conditions from our Young Avengers group were also there to make the case for 24/7 children’s palliative care, as were other parent carers. We were also delighted to be joined by professionals, academics and services from across the UK children’s palliative care sector, who took the opportunity to engage their local MPs.
NHS England officials Dr Jacqueline Cornish OBE (National Clinical Director, Children, Young People and Transition to Adulthood) and Dr Bee Wee, National Clinical Director for End of Life Care) also spoke. They set out how they are working to bring about 24/7 children’s palliative care through ‘Ambitions for Palliative and End of Life Care’. Our chief executive Barbara Gelb OBE called on MPs and peers present to take action in parliament on behalf of children with life-limiting conditions.
Following the event, we have emailed all parliamentarians who attended to ask them to support #carearoundtheclock by contacting ministers and local NHS and social care organisations. We have also asked them to promote the importance of 24/7 children’s palliative care in their local media. We will be following up with each MP and peer again in the coming weeks to ask them to meet with us at Westminster. We will use these opportunities to discuss in more detail the steps that are needed to make this crucial support a reality for all children and young people who need children’s palliative care.
How you can get involved in #carearoundtheclock
Please do forward our #carearoundtheclock briefing to any of your local MPs who were unable to attend – and ask them to customise and send the template letters we have created. These are all available to download at www.togetherforshortlives.org.uk/carearoundtheclock. Please also support for our campaign on social media by including #carearoundtheclock @Tog4ShortLives in your tweets.
For more information
Please do contact James Cooper, Public Affairs and Policy Manager email@example.com if you would like any further information at all about our plans to follow-up with MPs.