Living longer: living better

Categories: Care.

As the dust settles after the election, the future of health and social care services is a subject of vigorous debate.

One thing we know for certain is that – thanks to health and social care advances – we are all living longer. This is true across all groups of society, including for children with life-limiting conditions where the number surviving into teenage and young adulthood continues to rise.

The challenge we face now is not just helping such children and young people to live longer, but to live better. 

Much progress has been made within the paediatric palliative care services in this respect. The networks of healthcare, social services and other support systems have helped to create an environment in which these children can not only survive but potentially thrive and flourish. In easing many of the negative consequences of life-limiting illness, they have created the space in which life-limited children and young people can “live better”.

The “living better” space

While health and social care ease the burdens of illness it is beyond the budgets and arguably outside the specialist expertise of hospitals, hospices and other health and social care providers to provide all the opportunities that can enhance quality of life for these children and young adults in positive ways.

Living better means that, wherever possible and whatever our limitations, we live life to our maximum potential. It means having productive employment that engages our interests and our talents. It means having access to fun, friends, culture, sport, politics, new people, and new places. It means sharing special family times, forging goals and ambitions and working towards their fulfilment. It means being able to dream, and being encouraged and supported in experiencing the joy of a dream coming true. 

Lucy Watts, an ambassador for Together for Short Lives as well as Dreams Come True, spoke at the Together for Short Lives parliamentary reception at Westminster in 2013, commenting: “Although our bodies might be dying, our minds and spirits are fighting to live. I’m still a young person with wants, needs, hopes and dreams. I want to have fun and enjoy myself, do things people my age normally do, and I have plans and goals for the future”.

This is what “living better” amounts to.

Living better: charities and community groups can help

Across the country thousands of charities and community groups exist to provide opportunities that engender the hope, empowerment and positivity that can enrich young lives.

Some, like ours, focus specifically on life-limited children and young people, but many others may have resources and expertise to bring to this “living better” space, that is currently underemphasised, in our goals for care.

Living better: the power of dreams

Aspirational dreams are a powerful and universal element of human existence. They can help us as individuals and as communities to imagine and to shape our futures – and this is no less true for children and young people with serious conditions as it is for the rest of the population. 

But with the pressures of coping with their conditions, this group and their families often struggle to achieve their dreams by themselves.

Charities such as Dreams Come True have the expertise, reach and resources to make these dreams a reality. Crucially, because the funding model for many of these charities, ours included, is based on raising funds from private individuals and organisations, this support is not a drain on the public purse.

The need for evidence: the Power of Dreams research study

I believe that charities such as ours, that already operate in this space, should be finding ways in which the impact of their activities can be studied and, where possible, quantified.

For example, we are co-funding a study with the University of Stirling that is exploring the long term impacts of having a dream fulfilled on children and young people living with life-limiting conditions, as well as on their families.

This three year study is due to be completed in October but some of the interesting preliminary findings emerging from this qualitative research will be presented at the 6th International Paediatric Palliative Care Conference in Cardiff in July. Two of the themes that will be developed in that presentation are:

  • Hope. Hope for a dream experience helps a child and their family to cope with the potential uncertainty of their long-term future. Family members spoke of dreams bringing a sense of purpose as well as a sense of future. Older children in particular described how hope for the dream provided a form of focus and distraction in distressing situations.
  • Empowerment. Dream fulfilment is empowering for children and young people. Young people described how they often felt they had little control over their own lives and how money and time is spent on them. Having their own dream fulfilled helped them take charge of some decision-making and gave them a perception of control that was empowering. For some, this feeling of power came from being able to give something back to their families and provide something positive – anything from a trip to Disneyland or a weekend break to a holiday cottage in Cornwall.

The voluntary sector needs to build the evidence base from studies like this in order to be taken seriously as partners in care delivery.

Living longer, living better: reaching the underserved and the unserved

The power of data to persuade at policy level was highlighted at a recent gathering of senior figures from children’s hospices and other organisations working in the paediatric palliative care sector, brought together by Together for Short Lives.

At the meeting, Dr Lorna Fraser of the University of York discussed how the findings of the Leeds and other data mapping studies are informing recommendations for both improved services and better funding.

One interesting finding suggested from these datasets was that only 12% of children and young people who died aged 0-18 had a relationship with a hospice. While it is clear that the target for hospices is not 100%, there are nevertheless many thousands of children and families who may well benefit from such a relationship who are currently not being reached.

There was also an evident desire among hospice representatives and others at the meeting to engage more extensively and productively with those charities and community groups such as ours that operate within the “living better” space, in order that children in their care, along with their families, have access to as wide a range of opportunities for leading a fulfilled life as possible. The “living better” space needs to be recognised as extending throughout the lives of these children and other groups, who can call on resources outside of the healthcare budget, have a key role to play.

The interesting thing is that by working more creatively and productively with charities and community groups, I believe that hospices and the wider palliative care teams will be able not only to make a real contribution to helping the children and families in their care to live better, they will also find that through us, they will be able to reach many of the families that are currently in the underserved 88%.

The living better space – next steps

There is so much that can be achieved in making better lives for children and young people with life-limiting conditions. But it needs a new understanding of where the resources, the knowledge and the reach can be found that can help to provide opportunity, purpose, experience, aspiration and fun. The health and social care providers don’t have to occupy the “living better” space on their own. In fact they can’t do it on their own. The tent of paediatric palliative care just needs to become larger and charities and community groups such as ours invited in.

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