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Speech by Liam Byrne MP, Parliamentary Under Secretary of State for Care Services, 23 March 2006: Transition conference

  • Last modified date:
    3 May 2006

Speech by Liam Byrne MP to the Action on Transition

Not long after I came into this job, I said that my ambition for children's health was to make sure that we give all children a flying start in life.  So actually every child gates the opportunity to achieve.  The Chancellor said yesterday that we need to improve so that everybody gets that opportunity.  To be healthy. Stay safe.  Enjoy and achieve.  Make a positive contribution. Achieve economic well-being.

These are the goals we set out in Every Child Matters, our strategy for improving the life chances of all children.  In essence they are about something simple: how we allow every child to unlock their potential - whatever the potential they've got.

For every child is unique. 

I started thinking about this when we had our second child, John. I realized how different he was to his brother.  For the first time I thought about our unique individuality.  My children have the same parents - the same inputs, if you like - yet they are completely unique, beautiful because they are one of a kind.

This uniqueness means that the support our society must offer varies from child to child, from young person to young person.  These differences between us make life interesting.  These are differences we should cultivate, in a civilised society, because, for each of us, it is encountering differences that make us grow. 

But different people have different needs.  Children with ongoing needs, be it a disability or a long term condition, not only need what every other child needs but they need support for their health condition too.     

But they don't just need this in their childhood years.  They need support tailored to their needs as they become young adults. 

Transition matters.

Transition matters because this is a crucial period in young people's lives.  When they are planning their future.  When their needs and desires are changing.  When their lifestyles are altering.  Having a smooth transition from children's paediatric services to adult services is a significant step.  A step that will be vitally important if we are to help young adults to achieve their aspirations for the future.

Transition matters because extraordinary advances in medical science, that have already started but are going to accelerate in years to come, mean that more children and young people with serious long term conditions are surviving into adulthood than ever before. 

Infant mortality in England and Wales today is at the lowest ever level. Over the last twenty years, mortality rates from cancer in children have fallen by over one third, the largest fall for any age group.  And the number of people with severe learning disability is estimated to increase by 1% per annum for the next 15 years.

Transition matters because it is the next piece in the policy jigsaw that we have to resolve.  In recent years we have made big advances in children's policy through Every Child Matters, the National Service Framework (lauded throughout the country) and the establishment of a Children's Commissioner. 

But I think we have realised that services for young people for transition need a specific focus.  Young people need services tailored to their own needs - not children's services and not adult services. 

That is why we have published 'You're Welcome,' setting out how health and social care services can make themselves accessible to young people.  And that is why we are focussing now on transition. 

2 weeks ago I heard first hand just what transition to adult services can be like.  We commissioned the best authority, a unique group of experts - seven inspiring young people who I think you've heard from today.  They came to the Department to brief me. They had a range of different conditions that meant they had been in and out of hospital from a young age.

They've contributed to the conference today.  You have seen a video they have produced and you will be seeing a piece of drama that reflects that experience of transition.

Let me tell you what I heard when we got together.

I heard that the expertise of these young people was not listened to by professionals.  Young adults who have lived with their condition all their lives very often are the real experts in the care they need to receive. 

Toni's rare form of arthritis means that, as she said 'I know my illness better than any doctor knows it from a textbook.' Yet those who treated her didn't understand this or if they did understand were unable to respond.  And Lucy has a rare skin condition she has grown up with, yet social care services would not listen to her needs as she defined them. 

I heard that all too often professionals hadn't lost the gift of speech - but had lost the gift of communication.  As AJ said 'I don't mind if there is going to be a long wait, as long people tell me.'  Toni would arrive for appointments and find that they had been cancelled without any notice.

I heard that the young people had little choice in their care.   Ben told a story about his transfer from Hammersmith, where the doctors were specialists in his condition to Norwich, where they weren't.  If he had the choice he said he wouldn't have moved.

And I heard that very often relationships - important relationships - were neglected.  AJ had a great relationship with the doctors at his children's hospital - they were like his family. 

Yet during and after transition, Toyah found it difficult to get a relationship with her new doctors.  Although she has a named doctor she didn't see him.  Everytime she had a different doctor and they were usually reading her notes whilst she was there.  No continuity of care.

Yet all of these are not insurmountable problems and we are determined to sweep them away.  That's why we've published our new White Paper, Our health, our care, our say.  It is a new vision where the system will work round the person, not the other way round.

It was written by a great and unique collaboration.  In one of the most comprehensive public consultation exercises ever undertaken for a White Paper like this by government. A 140,000 people commented on the Adult Social care Green Paper and the White paper.

The evidence is there in the pages.

 People said they wanted more control of care.

So page 81.

We will put young people in control through giving them choice.  In social care we will be encouraging the take-up of direct payments so that people can purchase the care that they need. 

And we will be piloting individual budgets in 13 local authorities.  And if these are a success we will have a national rollout by 2010.  What they do is they allow us to bring together different funding streams and allow people to decide how it is spent.  Three of these thirteen pilots will be looking at the transitions

People said they wanted more knowledge and the skills to manage your own condition.

So page 112.

We will put young people in control through giving them skills to self-manage their long-term conditions.  The White Paper sets out our plans for a dramatic expansion of the expert patients programme, increasing its capacity to a 100,000 course places by 2012.

As part of that a self-management course for young people, which delivered by other young people with long-term conditions, will be piloted. 

Everybody, and we mean everybody, with a long term condition will by 2008 have an information prescription giving them detail on their conditions and highlighting resources in their community they can use.  And we will also be seeking to foster a partnership between professionals and people who use services. 

People said services should be designed around people.

So page 109.

The White Paper sets out how services should come together around people's needs.  Young people with long term conditions need support from a number of different agencies.  We heard that very clearly. 

These services also need to recognise the important role played by parents and carers. 

We understand this and the White Paper emphasises that organisations must adapt and work to meet individual's needs, not distort those needs to fit with their own approach.  So we want not just plans but joint teams in the same timeframe.  Joint health and social care teams, a personal health and social care plan and a common assessment framework by 2008.  And we will be recognising the potential of schools to provide health services to young people.

We will also be piloting the concept of Practitioners with a Special Interest in adolescent health.  Transition will be an absolutely key part of what these professionals do. 

So the White Paper offers an important part of the answer to improving transition.  It's not by accident, but because we listened.

And today we take a first step towards delivering that vision because today the Department of Health and the Department for Education and Skills are jointly publishing Transition: getting it right for young people. 

What that does is it succinctly sets out how to ensure transition meets the needs of young people, drawing on best practice nationally and internationally.  Best practice such as Chris experienced.

I said earlier that a lot of the young people who came to meet me didn't have the best experiences of transition.  Chris was the exception.   His experience in Nottingham was very different.  There was communication between organisations.    His nurse took him and others to the adult unit to meet and make relationships with those who would be looking after them when they transferred. 

Nottingham City Hospital have a full-time youth worker and a youth club which helped with the transition.  They also went on a residential stay that looked at transition in services as part of wider personal issues - placed in the context of other relevant things to young people such as alcohol.

Shows what can happen when professionals get it right.

When Lucy's sister Hannah moves into adult health services she will need different support because although they share the same skin condition, Hannah also has learning disabilities. 

So challenges will vary from young person to young person.  If the young person has received a paediatric service from a children's tertiary hospital, moving to a district general hospital can be daunting. 

If a young person has a relatively common condition such as diabetes, the size and scale of the adult services can be bewildering.  And for some young people with disabilities that there is no equivalent of the paediatric department that co-ordinates the whole care package will be very intimidating. 

Every experience is unique - because every child is unique - but our ambition to improve services has to be the same throughout.

Conclusion

At the end of the time I had with the young people AJ asked me 'what can you really do?'  'What difference will we see?'  'Is anything going to be different.'

Well there will be a difference - the White Paper and the transitions guidance demonstrate how important this issue is.

But when we think about improving the transition process we must think about how young people can lead that change.  To create the world that they wish to see.

I was reminded of a very famous speech.  Forty years ago Bobby Kennedy addressed students in South Africa.  He told them that the 'world demands the qualities of youth.' 

Young people bring something unique.  A state of mind.  A curiosity.  A fresh perspective.  An inquisitiveness.  And an impatience to get things done.

What better qualities, assets and resources could we have as we set about change?  We need to listen and learn from what young people say. 

I see this clearly when I return to my constituency on a Friday.  I go to youth conferences in every school.  And I listen to young people's ambitions and ideas for how things should be done differently.

So in designing transitions services, the views of young people must be the starting point.  Their perspective is crucial if we are going to get the good experience that they want.  The good experience that I want for them.  The good experience that everyone in this room would support.

The process of transition that recognise the unique needs and aspirations of different young people.

We have a lot of work to do together if we are truly going to give everybody in England the flying start they deserve to life.  To succeed we will need a young state of mind and the inspirational example of young people like those here today.

Thank you

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