As political parties release their 2017 Election Manifestos, WellChild is urging all party leaders to recognise the ‘UN Convention On The Rights Of The Child’ and ensure that the UK’s growing population of children and young people living with serious and exceptional health needs are firmly on the agenda.
Growing numbers of children and young people are spending months and years in hospital simply because there is no support enabling them to leave. Families face so many avoidable challenges just to get their children home. Once home, they experience a new set of hurdles as they navigate the maze of continuing care.
It is increasingly the norm for families to become the ‘unpaid workforce’, left to deliver 24/7 complex medical care to their children without adequate training, support or respite. This includes high safety risk procedures such as managing ventilation, oxygen, complex medicines regimes and feeding by tube.
Health and social care not just for adults
As adult health and social care dominates the media headlines, the funding provision for children and young people living with serious or exceptional health needs is quietly being dismantled to a point where these children and young people are rarely acknowledged.
In the Government’s Spring Budget earlier this year, an extra £2bn social care funding was pledged. It contained no provision for children and young people with serious and exceptional health needs, or their families.
Of the estimated 770,000 disabled children and young people in the UK today, around 100,000 children will have serious or exceptional health needs, 1400 will require long term ventilation, and a further 6000 are dependent on some form of technology. What’s more, these numbers are increasing every year as the survival of premature babies improves and new medical treatments become available.
Services to support these children and young people are at breaking point and families find themselves too often isolated and burdened with the level of caring responsibilities.
The ‘UN Convention On The Rights Of The Child’ clearly states:
- Every child has the right to the best possible health. (Article 24)
- Governments must support parents by creating support services for children and giving parents the help they need to raise their children. (Article 18)
- A child with a disability has the right to live a full and decent life with dignity and, as far as possible, independence and to play an active part in the community. Governments must do all they can to support disabled children and their families. (Article 23)
WellChild is therefore calling for the next Government to urgently address what has now become a dangerous situation in the provision of health and social care for this group of children and young people.
In particular, we urge health ministers to address these key areas:
1. Urgent investment in health and social care for children and young people
In particular, to ensure that families have access to 24/7 care and support at home. Caring for these children and young people is not a 9-5 job and the availability of high quality, round the clock support must become widely available. This must also include greater provision for short respite breaks for families.
2. Urgent action over dangerous workforce pressures
Yet another report highlighting the child health workforce crisis was released recently. This time by the Royal College of Paediatrics & Child Health (RCPCH) who reported a serious shortfall in the child health workforce.
Workforce numbers have failed to keep pace with patient numbers leading to dangerous pressure on an already stretched service. Hospital admissions are up 25% over the last two years, whilst the numbers of doctors and nurses applying to paediatrics have fallen sharply. Steps need to be taken urgently to safeguard the future availability of care and support for this growing population of children and young people.
Community services are also vulnerable with a fall in the number of community children’s nurses and the availability of training courses falling.
3. Evaluation of the quality of care and costs of agency carers
Anecdotal feedback from our 32 specialist WellChild Nurses and network of over 1,500 families across the UK raise significant concerns about the quality and indeed, the cost of using agency over paid NHS carers to support families at home.
We hear frequent stories of inadequate contingency planning if a carer is unable to make a shift, and of carers inadequately trained to provide the highly specialist care that many of these children and young people need.
The impact on families who are severely sleep deprived, isolated by their caring responsibilities and seeing their family life implode as they struggle from day to day, week to week is unacceptable and is an increasing safety concern.