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1. Thank you Christine [Lenehan] for your kind introduction.  I am very glad to be here today to make this speech, one year on from the publication of the National Service Framework (for Children, Young People and Maternity Services), it gives me the chance to set out what I see as our ambitions for the future for children's health.

2. It also gives me the chance to speak about some of the extraordinary people I've met over the last few months as I've travelled up and down the country.

3. On Monday I met Dr Carlos De Sousa at Great Ormond Street, pioneering new treatments in epilepsy surgery, and invasive monitoring of the brain, pushing back the frontiers of treatment for the 3,000 children with uncontrolled epilepsy.

4. The week before I met Sam Smith, and a paediatric oncology liaison nurse Pauline Sutherland at Christie's Hospital, in Manchester who are redesigning services for teenagers with cancer.  At Alder Hey I heard from Lynda Brooke, a paediatric palliative care consultant who works on the team leading stem cell research, and planning how to roll our palliative care services out from hospital into the community.

5. In Nottingham, Bolton and Leeds, I met the neonatal teams to hear about the new ways of working that doctors and nurses are developing there to drive continuous improvement in care for babies born very prematurely and how they are literally ensuring that babies who would have in the past died, have instead lived.

6.  And everywhere, I have met families and some of the brightest, bubbliest and bravest children I have ever met.  They cannot speak highly enough of the care they received; on their behalf I would like to say thank you to those working in the NHS and social care.

7. But in conversation after conversation after conversation the revolution in medical science was spelt out to me.

8. This I would argue is one of the great forces shaping children's health policy today - which forces us to rethink the way we provide care in order to satisfy our ambition as a government to create a country of more equal life chances.  These two forces together, the advances in medical science and equalising life chance, will shape the landscape on which we seek to serve children with disabilities.

Let me take each in turn.

First let me take the advances in medical science.

9. Since we came to office in 1997 we have made huge advances in the battle against big killer diseases. Our investment in advanced medical science, in 138 new hospitals, in over 100,000 new doctors and nurses has cut waiting times from the scandal of over a year and a half to under six months in some cases and quite simply cut death rates: mortality rates for cardiovascular disease in the under 75s are down nearly 31%; cancer mortality rates are down 12%. People as a result are living longer and that means children too.  That means that children with disabilities or conditions which we refer to as life-threatening or life-limiting, such as cystic fibrosis or muscular dystrophy, are living longer, and with advances in therapy we are driving improvements in quality of life for us all.  With new therapies like intrathecal baclofen or botox to reduce spasticity in children with cerebral palsy.

10. There are new therapies constantly being made available, but this will mean nothing without advances in equalising life chances.

11. Because as we add years to life, so we must add life to years.  If more children have the chance to survive longer, then we must  invest to ensure that those lives are rich and fulfilling, especially as we know those who are disabled or who have complex health needs arguably experience the greatest health inequalities of all.

12.  It was in 1998 the Acheson inquiry stressed that while remediable risk factors affecting health occur throughout life, childhood is a critical and vulnerable stage where very often poor socio-economic circumstances have lasting effects.  Not surprisingly, that inquiry recommended that many of the interventions with the best chance of reducing future health inequalities in physical and mental health related to parents, particularly present and future mothers and children.

13. In January 2005 the Government published its strategy for transforming the life chances of disabled people. The report 'Improving the Life Chances of Disabled People' states quite simply that, by 2025, disabled people should have full opportunities and choices to improve their quality of life and be respected and included as equal members of society.

14. 'Our ambition is to create a Britain of equal life chances and key to this is better healthcare for all our children, especially those with complex disabilities who need it most.'

15. It underlines the point that as for all children, early years investment is absolutely vital.

16. Early years and family support is highly relevant to disabled children and particularly to children with life-threatening conditions, but so too are independent living and employment  because even children with palliative care needs are now increasingly surviving to become young adults.  The transition from children and young people's services to the adult world is becoming increasingly important not only for disabled young people but also for those with life-threatening and life-limiting conditions. 

17. But as we set about this work, we face as you know great challenges - not just the health inequalities we inherited but also the emergence of new risks.

18. It is a sad truth but there is an almost nine year difference in life expectancy between a boy born today in Manchester and one born in Kensington and Chelsea.  For families and children with complex disabilities, the life expectancy gap is often wider.

19. In many of the key public health priority areas such as sexual health, alcohol, obesity and mental health, the health of adolescents is not accelerating as quickly as we'd like or need it to.  We now also know that health risk and self-care behaviours are laid down in adolescence and continue into adulthood. Intervening with this group is therefore crucial.

20. To tackle these challenges effectively we have to change the NHS and social care:

21. First as medical science moves on, how do we ensure healthy life expectancy keeps track with life expectancy?  It must mean the NHS and social care will have to work together in new ways - but how do we make sure in complex systems that individuals and their families are in control of the care they receive? It has to mean that the NHS and social care working more closely together.

22. Second, given the health inequalities we have made it our mission to tackle, how do we make sure that as new money is invested it helps power the heath service into every corner of every community?

23. Third, in a few years time NHS spending will top £90billion - if it was a nation state it would be the world's 33rd biggest economy - far too big to run from the Department of Health's headquarters in Whitehall - but as we devolve power to create a patient led NHS, to respond to patients, how do we ensure consistency in entitlements in different parts of the country?

24. On the first question, we are making a few steps forward with the forthcoming white paper. The announcement of my friend and colleague Lord Adonis, on expanding individual budget pilots to children is absolutely key to helping us understand exactly how we can put children and families in control of their care - and to tackle some of the problems that were outlined by Kate Lister this morning.

25. Let me just tell you about one man who'd life was changed by individual budgets. A young man with very limited communication capacity who had been placed in a residential college some distance from his home was making it increasingly clear that he was unhappy with this placement. Because he lacked speech with which to communicate his unhappiness, his frustration tended to boil over into so-called 'challenging behaviour'. It was becoming increasingly clear that his placement (which cost many thousands of pounds a year) would soon break down. Local social workers would then be faced with the difficult task of finding him somewhere else to stay.

26. The In Control project was already operating. The young man and his family were introduced to the idea behind it and after discussing the level of funding they could expect to have, they were able to develop a scenario in which he moved back to the family home and was supported by somebody he knew well and trusted. In this case, it happened to be an aunt. The flexibility of In Control allowed the aunt to be properly paid for carrying out this job and to give up her previous job.

27. Just a few months down the line, the young man is clearly enjoying life. He is back in the family home with his pets and other home comforts. His parents, who were never happy about him living away from home, but did not feel that they had the support to cope with him before, are also much happier. They are delighted with how settled he seems and are beginning to pick up their own life together after so many years of having to put their own needs on hold in order to support their son. So let's be clear: personalised care can make a world of difference.

28. But to answer the third question of how to achieve consistent standards, we need help like the exemplar we are publishing today.

29. The Children and Young People's National Service Framework sets out very high expectation of what we think our health and social care services for children should be.  The standard for disabled children requires that over the next 10 years, disabled children, young people and their families experience services:

30. 'Which are based on assessed needs, which promote social inclusion and where possible, which enable them and their families to live ordinary lives.'

31. Underlying this standard is that disabled children who need ongoing health interventions actually have:

32. 'Access to high quality, evidence-based care, delivered by staff who have the right skills...'

33. Now there are 3 important things to say about the NSF:

34. The exemplars are designed to show how the standards and key themes of the NSF can be put into practice. This is done by using the 'child's journey' for particular conditions.  The exemplars simply show what some services might look like following implementation of the NSF standards.

35. In September 2004, we published the exemplar on Autism, alongside the NSF.  We have since published another on acquired brain injury, and today I have the greatest pleasure of announcing the launch of the latest of our exemplars, on complex disability.  I think some of the comments we have heard this morning illustrate the importance of doing more to ratchet up the quality of service provision for this particularly disadvantaged group.  To that end I hope and believe that this exemplar will play a significant part.

36. The new exemplar features Maria and describes the experience that she should have of receiving services at each stage of her development from just before she was born until she reaches the transition to adult services.  Maria has cerebral palsy and epilepsy and a number of other associated problems which develop as she grows, including a problem with her spine which requires surgery.

37. The exemplar illustrates the great range of professionals who come into contact with Maria, first as a baby and then as she grows, and sometimes the first part of all is the most important.  In Maria's case that part was the Children's Centre not only during her pre-school years but also after.  It is at the Children's Centre that her spinal problems are first identified when she is seven years old and where support for transition into later life was first put in place. Planning is critical.

38. Transition is a process which occurs during childhood as well as when a young person becomes a young adult.  Huge effort was needed managing Maria's transfer from primary to secondary education. And planning the process of transition from young people's services to adult services began  as early as the age of thirteen.

39. So we have big challenges to face up to: to match advances in medical science with such advances in assistance and care so that we create a country where life chances of all of our children are more equal than they are today.

40. I recognise the frustrations of parents struggling to access services when and where they want them.  We must expand our investment to care;  we must expand the control in the hands of children and their parents; and we must expand the stock of good practice and experience on which frontline professionals can draw.

41.  I hope many of you will be able to join us in Birmingham on the 8 December as we sit down with experts and parents to advise on what more we can do from the centre to drive this agenda forward.

42. What struck me as I have visited up and down the country, is that you and me together work for some of the most inspiring people in the world.  We work with some of the most inspiring public servants in the world.  If these people and parents are frustrated, it is important that the system changes, and today is the first step.