End of Life Care

Baroness Bakewell of Hardington Mandeville Excerpts

Tuesday 14th March 2017 Lords Chamber

[Baroness Bakewell of Hardington Mandeville (LD)]

My Lords, I congratulate the noble Baroness, Lady Finlay, on securing this very important debate. My contribution is specific and restricted entirely to children who have life-limiting conditions, in particular those under the age of three. Young children with complex medical conditions receive no support from the state. They may require specialist equipment. They may need adapted buggies, beds or cots. There will be considerable strain on the family, especially if there are other siblings. However, there is no support for these hard-pressed families.

In January, the BBC’s “Spotlight South West” featured the case of a two year-old boy from Devon with Tay-Sachs disease. This arose from his family not having the financial means to secure the specialist vehicle they needed to transport him in a wheelchair. Because he is under three, his family are denied access to the disability living allowance mobility component. Had they been able to claim this benefit, it would have enabled them to achieve some simple but important objectives, such as going to the park. Most families take this activity for granted, but this family were not able to enjoy the fresh air, feed the ducks or watch the birds.

In 2016 there was a 61% cut in funding for children’s palliative care charities from upper-tier local authorities, despite these having a statutory duty to provide short breaks. However, their annual statement of provision gives no detail on this particular provision. Short breaks provide important relief for families. The lack of a break could lead to family break-up, and other siblings may suffer.

Adult hospices receive 33% of their funding from clinical commissioning groups but children’s hospices receive only 25% funding. Some CCGs do not fund children’s hospices at all, on the basis that their ethos means they are unlikely to turn children away. It is, as the noble Lord, Lord Judd, said, a postcode lottery. Best practice is to be found in Luton, where the NHS, local authorities and GPs are collaborating. Some areas do nothing, not recognising the problems that these families face. Can the Minister say how the Government will support CCGs to recognise the benefits of funding vital, cost-effective, non-clinical child palliative care services for the whole family to enable them to cope more effectively with their situation, and thus deliver both short-term and long-term savings for CCGs?

The charitable organisation Together for Short Lives has been pressing the DWP to change the DLA rules so that children under three who depend on access to a vehicle for a variety of reasons can access the mobility component. They are already recognised by the DfT as having specific mobility needs through access to the blue badge parking scheme—so why not by the DWP?

The families of children with very complex needs deserve support. They wish to do the very best for their child’s short life—to make the most of their time with their child and have happy memories to comfort them when their child has died. This is not just about the quality of life for such children; it is also about the quality and dignity of their death.

The number of children and young people with life-limiting conditions is increasing. Children’s palliative care charities want to provide vital care for every child who needs it, but state funding is not keeping pace with demand. A 2015 report showed a 50% increase over 10 years in the number of children with life-limiting conditions in Scotland—from over 4,000 in 2004 to over 6,000 in 2014. If this was replicated across the UK, the number of children with life-limiting conditions could be much more than the current estimate of nearly 50,000.

The number of these children has never been monitored. As a result, the Government, the NHS and local councils are failing to plan accurately and budget to meet the needs of children and young people in this category. What action can the Minister commit to in order to better understand the number and needs of children with life-limiting and life-threatening conditions? I look forward to his response.