Government’s drive towards Brexit mustn’t put the brakes on much needed reform for children with life-limiting and life-threatening conditions.
Together for Short Lives has expressed its disappointment that some of the good commitments made in the Conservative Party manifesto which would support children with life limiting and life threatening conditions and their families have not been reflected in the Queen’s Speech.
In particular, we believe there is cross party support to ensure all families who lose a baby are given the bereavement support they need, including a new entitlement to child bereavement leave. This was included in the Conservative manifesto but was sadly missing from the Queen’s Speech.
The legislative programme also omitted any reference to end of life care – despite strong reference to that in the manifesto. Together for Short Lives will continue to work with Government and others to ensure that they fulfil the manifesto commitment ‘that every person should receive attentive, high quality, compassionate care, so that their pain is eased, their spiritual needs met and their wishes for their closing weeks, days and hours respected.’ This commitment is beyond party politics, it is the hallmark of a good society.
We welcome the commitment to review social care. However, it is vital that the needs of children and their families are included in that consultation – to date they have been ignored in this debate, yet the number of children with life limiting and life threatening conditions is growing – we need to act today to avoid a further crisis tomorrow. Vital services they rely on include short breaks for respite, transport, equipment and home adaptations.
We understand that much of the government’s focus over the course of this parliament will be on passing the legislation needed to withdraw from the European Union. However, it is crucial that in the drive towards Brexit we mustn’t put the brakes on urgent reform elsewhere. I am therefore disappointed that the government has missed an opportunity in this Queen’s Speech to make good on some of its manifesto commitments to help transform care and support for these children with life limiting and life threatening conditions and their families - the most vulnerable in our society.
While I am pleased that the government has set out plans to review social care funding, I call on ministers to make sure that this process includes children’s social care. Tens of thousands of children need social care too - yet we are experiencing a children’s social care funding crisis, with local authority funding for voluntary sector children’s palliative care services falling by a staggering 61% between 2015/16 and 2016/17.
The Conservative manifesto made a series of pledges that, if realised, will improve outcomes for children with life-limiting conditions. These include a commitment to choice in end of life care and statutory bereavement leave for parents whose child has died. These policies were not included in the Queen’s Speech and we urge the government to clarify as soon as possible if and when these measures will be implemented.
Barbara Gelb OBE, Chief Executive of Together for Short Lives