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Thursday, 20 November 2014

Children's Health and Wellbeing Takeover Day - My Speech


19th November 2014 - I gave a speech at the Children's Health and Wellbeing Partnership Takeover Day at the Department of Health. The event was organised to draw together important paediatric and child health professionals with young people and to work together to improve services for children and young people and their families. My speech was about coordinated care, also called integrated or joined-up care. I received a certificate for my hard work and quite a few people were asking after my meeting with Dr Dan Poulter MP, which we hope to fit in before Christmas or in the New Year - before the elections, anyway. 
A year ago today I spoke in Parliament, starting off my speaking career and kickstarting my charity work. What a long way I've come since then. I never thought a year on from Parliament that I would have achieved so much. Here is my speech from the Children's Health and Wellbeing Takeover Day. 

Increasingly more complex children and young people are being managed in the community. They require a multitude of different specialists, professionals and services to be involved in their lives and coordinating their overall care is a huge challenge. Each specialist and service involved are often only looking at their area of expertise in relation to the young person. Coordinating their care is a very hard and time consuming job - and this responsibility frequently falls to the parent or carer. Medical professionals, GPs, District Nurses, Social Services, Continuing Health, Education Authorities, CAMHS, Psychologists, Children's Support Services, Hospices - the list is endless  - and for each of these specialists to be aware of who else may be involved in the care of the child or young person is an impossibility.  The parent or carer is left trying to keep each service up to date - an impossible task when looking after their child is often a full time job in itself.  Adding to this already, almost impossible role, is the fact that a parent or carer will often not have the necessary connections and access to pass on important information and will be left playing piggy in the middle, trying to keep all professionals in the loop. This is why coordinated care is so vital.  For one key worker, central to the young person’s care, to coordinate and draw together all the information would not just be good practise, but a necessity. This key worker would know the young person as an individual with wants, needs, hopes and dreams, not just looking at their area of expertise. All care could then have the young person as central to the services provided round them.

I am a very complex patient who is managed in the community, with many doctors spread across London hospitals, and numerous healthcare professionals, services and agencies involved in my care. My mum coordinates my care and tries to draw everything together to provide what I need. Coordinated care would have greatly improved my experience of health services, education and Social Services through my teenage years as everyone would have been working together and taking into consideration what I wanted. My care between the ages of 14 and 18 was very disjointed and I suffered as a result, falling through the cracks in some areas and experiencing substandard care in others due to a lack of communication and a lack of understanding. Had everyone worked together as part of one team, putting my needs at the forefront of my care, it would have greatly improved the quality of my life and would have drawn my care together to be one package of support, rather than each agency looking at their small area of expertise and everyone working with different aims and understanding. 

My care this year has become ever more complex and involved.  My health has deteriorated drastically and so much has been happening.  Many of my key professionals who need to be aware of hospital admissions and major health developments are totally unaware of recent events.  Urgent medical needs could be seriously compromised in the event of emergency treatment.   

To me, coordinated care means that everyone involved in my care works together, with my goals and dreams as well as my physical needs at the centre of this. It means professionals communicating with each other, looking at the big picture, listening to me and working with me, and all the services coming together to help me achieve and live the life I want to lead. Coordinated care also means that my needs are regularly reassessed and additional support or specialist support is brought in as my needs change, but the control over when things are reassessed and what support is given lies with me. I have very little control in my life and so to be able to control who comes in and when, and what type of support I receive, is crucial. When looking at coordinated care, it’s also important to factor in the needs of parents and family members. They need support too. Parents, especially those who have other children, need time away from the poorly child/young person to support siblings and other family members. If all agencies are working together, communicating with each other and working towards the same goal, and a named key worker is drawing all the care together, acting as a liaison between the individual, their family and all the agencies and professionals involved, coordinated care would be a huge success and in addition to improving the experience of children and young people and their families, it would help to prevent people from falling through the net. 

Recognition of this vital role of coordinated care is an exciting move forward in children and young people's care.  The difference it will make for the person involved is huge, the benefit to their families will be immense and each health professional and service provider will know that they have each piece of information they need to give the best possible care.




About Lucy Watts MBE


Lucy is a disabled 22 year old young lady with life-limiting complications of Ehlers-Danlos Syndrome. She writes and speaks for a number of charities and runs this blog. She is an Ambassador for Together for Short Lives and Dreams Come True, Trustee for the Pseudo Obstruction Research Trust and is the first Youth Ambassador for the International Children's Palliative Care Network, also working with charities such as Scope and the Council for Disabled Children as well as Association for Young People's Health via the Young People's Health Partnership, the Children's Health and Wellbeing Forum and the Children and Young People's Health Outcomes Forum. Lucy was appointed MBE in the Queen's New Year Honours 2016 for her Services to Young People with Disabilities.
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