Skip to main content

Care Bill leaves forgotten young generation on cliff edge

With more people living longer, much of the concern about the future of social care has been focused on a growing elderly population.  But more young people than ever before with a range of life-threatening or life-limiting conditions are living into adulthood, and the need for planned social care is vital for this transition.

Within my lifetime I have seen a fundamental shift in attitudes to and life expectation for those with life-limiting disabilities. None gives a better example than changed approaches to Down's syndrome where it is now understood that with support those affected can expect to have productive and independent lives into adulthood. 

But what most often provides the key to coping with adulthood is available support and advice.

The support charity Together for Short Lives is calling on Peers to amend to the Care Bill today (14 Oct) to ensure a generation of young people with life-limiting conditions do not have to face a "cliff edge" in their care and support.

Peers will debate amendments tabled by Lord Patel that, if agreed, would ensure a forgotten generation of young people with life-limiting conditions are able to live as full life as possible to adulthood.

As it stands, the new law fails to set out when local authorities should assess the future needs of young people before they turn 18 years old – meaning that for thousands of young people with life-limiting conditions, plans for this important life-step may not be made in time. Badly planned transitions are currently leaving many of these young people “standing on the edge of a cliff, about to fall into a black hole” – facing a reduction in the support they receive and the range of services they can access.

Lord Patel’s amendments, supported by the Together for Short Lives Transition Taskforce, would ensure that children who need services at the age of 14 (and are likely to continue to need services as an adult) have a well planned transition of care initiated by their local authority. They would guarantee that a young person over the age of 16 years old would have a five year rolling transition plan.

Lord Patel said, “Much of the focus on the Bill has been about reforming the way we pay for our care as our population gets old. However, at the other end of the spectrum there are a growing number of young people living longer with critical, incurable conditions who are being overlooked. More young people with a range of different conditions are living into adulthood than ever before thanks to medical advances. Current failures to plan for their transition to adult care mean that many young adults with life-limiting conditions die before they can realise their ambitions to live independently. The need to ensure timely and well planned transitions for these young people is now more pressing than ever before.” [4]

In his speech today Lord Patel will focus on the story of 20 year old Lucy Watts whose case clearly demonstrates why good transitions to adult care are essential. Lucy’s has Ehlers-Danlos Syndrome, a condition which means she has to be fed straight into her bloodstream via a tube. Lucy can only sit up for up to five hours every day – she uses a wheelchair, but has to spend the majority of her time in bed.
Lucy’s mum, who also juggles a full time job, carries out the majority of her care - and all of Lucy’s day-to-day medical care.

Lucy’s transition to adult services was excellent because there was timely and well-planned joint working between children's and adult services. Lucy’s transition gave her control over decisions about her care for the first time – an essential factor for Lucy as she is not in control of many areas of her life.

Lucy herself has said, “Transitioning from children's to adults in the medical and social world is a huge step. You are moved into a world where you must make decisions about your life and your care – if you are able. The people involved in my care were brought in before I started the transition, so I had time to get used to them, which gave me the confidence to be open and honest. This is your life, so speak up and make your life, and your end of life, the way you want, and need, it to be.”

David Strudley, chair of the Together for Short Lives Transition Taskforce said, “Turning 18 years old should be a time for celebration, especially for those young people who have not expected to reach adulthood. Instead for many families it is the cause of great anxiety, not knowing whether they will receive the vital support they rely on every day. Lucy’s story shows that a successful, well-planned transition to adult care is possible - Lord Patel’s amendments would make that a reality for all young people with life-limiting and life-threatening conditions.”

Let's hope Lord Patel's amendments are passed and accepted by the government.

Comments

Popular posts from this blog

Bad trade kills the planet.

One problem with the financial crisis of 2008/9 is that it focused attention on the banking system as if it could be separated from global economics.  It fostered the notion that all that was needed was to reform the banks and all would be well.  The underlying assumption was and is that global economics didn't and doesn't need fixing.  Everything works well but for the financial system.  Let's all keep calm and carry on.

Yet, the focus on a bad banking system hides an underlying economic malaise,  The economy depended on banks lending, and growth was predicated on debt, debt and more debt.  This was not simply a problem of the banking system.  It was, and remains a problem arising from the mythology of economic growth.

Politicians have long fostered the mythology of growth.  Growth became a  mantra.  Growth is good.  Good is growth.  Let's grow! Growth as and is presented as a miraculous cure.

Let's call this the first neoliberal myth.  The second neoliberal myth…

Hummingbird exposure to pesticides

Many have responded to the campaigns to stop the use of pesticides killing bees.  Bees are not the only animals affected.

Hummingbirds are noted as a species of conservation concern by Partners in Flight, and their populations are estimated to have declined by 60% between 1970 and 2014.



New research reveals that hummingbirds and bumble bees are being exposed to neonicotinoid and other pesticides through routes that are widespread and complex. The findings are published in Environmental Toxicology & Chemistry.

To measure exposure to pesticides in these avian pollinators, investigators made novel use of cloacal fluid and fecal pellets from hummingbirds living near blueberry fields in British Columbia. They also collected bumble bees native to Canada, and their pollen, and blueberry leaves and flowers from within conventionally sprayed and organic blueberry farms.

The researchers detected pesticides and related compounds in cloacal fluid and fecal pellets of hummingbirds revealing…

Brexit won't save the planet

Brexit isn't an ideal. It might break the cosy economic and political illusion that all growth and trade is good. But there is little thinking behind it. It won't lead to better trade. It won't save our planet.



No plan for Brexit The UK is  now just months away from leaving the European Union, yet still the government has no plan for Brexit. Sector after sector of British society are registering their concerns about the consequences of a 'no deal' Brexit.  The country is in the dark about what the future might hold.  Key issues remain unresolved, yet it is as if it doesn't matter.   Brexit, remember, means Brexit!  
Whether we are for or against Brexit we should be concerned that the government can't agree on what kind of deal they want with our biggest trading partner - the European Union.  
There is no idealism behind Brexit, and no vision for the future.  Instead, there is a blind hope that it will be 'alright on the night'.  That somehow a…