New resources launched to help children with complex health needs live “An Ordinary Life”

As part of the charity’s An Ordinary Life project, the Foundation for People with Learning Disabilities (FPLD) today launches a free interactive booklet and communication passport to help families transform the quality of life for their child with complex health needs or who is dependent on medical technology to survive.

This is about children and young people who are like Mitchell. Mitchell has brain abnormalities, epilepsy, visual impairment and he also hypo-ventilates which means that he under-breathes. To support his complex health needs, he needs oxygen 24-hours a day to help with his breathing and he has a gastrostomy to feed him because he has trouble with his swallowing. Mitchell’s mother Jo Fitzgerald, says: “I became frustrated by the bureaucracy and lack of flexibility in the support that Mitchell was receiving. To me, it made sense for Mitchell to be central to the decision-making, so I realised something had to change.”

It is estimated that over 6,000 children in the UK have complex health needs; these are children who are disabled, may have special educational needs and/or life-limiting conditions. While their medical needs are often well attended to, their social, emotional and developmental needs are not prioritised. This group of children is growing as increasing numbers are surviving in to adulthood thanks to improved healthcare and the use of medical technology. There is now a group of children and young people who require very individual and family-centred support to ensure that they can make the most out of life – even the simple things so many of us take for granted.

The FPLD’s booklet, An Ordinary Life, has been designed to help families make sure their child is at the heart of their own care. Thirteen families with children who have complex health care needs were interviewed, in addition to health and social care professionals, to identify the barriers that families face when trying to get the right support for their child. The booklet addresses these issues, which include education, transition, emergency planning and knowing your rights, and signposts families to more information and helpful services.

The charity also launches an interactive communication passport, A Book About Me, which can be completed to contain personal information about the child’s needs, medical conditions, likes and dislikes, in order to help new people, such as health professionals, better understand the child’s needs. We know how essential communication passports can be, as illustrated by the tragic death of Martin Ryan, who had Down’s syndrome and epilepsy and died as a result of hospital staff not feeding him for 26 days as they didn’t know how to.

Mitchell was one of the first people in the UK to have a personal health budget. Jo Fitzgerald, Mitchell’s mother, talks about how it’s changed their lives:

“The first hurdle we faced was getting the confidence to challenge the system – I was very scared of rocking the boat, worried that by drawing attention to ourselves that we would actually end up worse off.

We’d been managing a small direct payment over a period of time and realised what could actually be possible – that we could organise the staff, train them, and expand that experience in to a wider, more tailored package for Mitchell. It was clear that this had never been done before, but our PCT was committed to making it work. Things have changed dramatically for Mitchell. We’re trying to give him a good life and keep him well. His personal health budget has given us a lot more freedom as a family and we can do things that we couldn’t do before.”

Jill Davies, Research Programme Manager at the Foundation for People with Learning Disabilities, says:

“Children with complex and severe health needs still have the same ‘ordinary’ wishes and needs as other children – what matters most to them is being able to live at home, go to school, spend time with friends and take part in leisure activities with their family and peers. And this is also important for their families.

To try and achieve as ordinary a life as possible, families constantly fight for the best care for their child, and this is where we hope our resources can make a difference. The parents we have spoken to say that they had to break down many barriers to achieve better outcomes for their child, including getting their house adapted to suit the child’s needs, getting better information about what individualised funding for health and social care can be used for, managing the transition from children to adult services and finding out about the benefits of employing your own team of support workers.

Our resources hope to support the family as a whole by providing them with more information to develop a personalised, holistic package of support which will ultimately improve their quality of life.”

The FPLD’s An Ordinary Life project aims to improve the quality of services to children who need long-term care and their families through supporting families to develop individual, personalised, and person-centred planning solutions. This is a three-year project funded by the Department of Health. The next stage of the project will see ideas for practical action from the An Ordinary Life booklet piloted in five areas of England with the aim to produce good practice guidance at the conclusion of the project in March 2014.