13 Nov 2003

Services for Children with Acquired Brain Injury – Getting it Right in Northern Ireland.

Northern Ireland Traumatic Brain Injury Forum & DHSSPS Seminar. Speech by Nigel Williams Northern Ireland Commissioner for Children and Young People.

One of the most memorable experiences of my first five weeks as the Commissioner for Children and Young People was my visit to the Children’s Hospital at the RVH to meet Dr Elaine Hicks and the team working with children with acquired brain injuries (ABI). I thought it would be helpful in preparing for this conference to see what the issues were for those working directly with children with ABI.

I am conscious that it is an immense privilege for an outsider, without any professional medical background, to enter into the intense and skilled world of a specialist unit in a modern hospital. In many ways it was an awesome experience – you quickly realise how little you know about the crucial business of helping people who are very ill. But at another level, that of a fellow human being, with a profound concern for children and their well being, I hope my independent observations may be of some relevance. Moreover as Commissioner, as I will explain in a moment, I do have various ways of making a difference in relation to children’s services.

So what did I take away from my visit to the Children’s Hospital:

  • First, I was struck that the facilities and the staff were child centred. Everything had been planned to help children feel at home and as comfortable as possible with the treatment they would received.
  • Then I was very impressed with the skill and dedication of all the individual staff. It was obvious that this was a team effort. I saw the hospital school, the therapy pool, the wards, and spoke to each of the different professions involved. It was clear that each child and their family needed the support of the different professionals involved at various stages of their child’s illness and recovery.
  • Third, I could see that there had been a huge investment in the best possible modern equipment, in a purpose built building. It was clear that if a child does have a very traumatic injury that this team had the best resources at their disposal to intervene and save life.
  • Finally, I was also struck by the life changing experience, not only for the child, but for the family of a traumatic brain injury. I met one family where the daughter had been admitted 10 days earlier following a road accident in which she was run down by a lorry. The treatment had just reached the stage where the child was stable, and for the first time they could begin to think that their child might survive. I don’t think any of us can quite imagine the extent of the disruption and psychological challenge posed by your child enduring such an accident – I can only think of it as something which is numbing and throws you into autopilot.

So these were my immediate impressions from my visit. It also left me with some questions in my own mind about how as Commissioner I might help with the challenges that families face who have a child with a traumatic brain injury. Let me tell you a little about my role.

The legislation which established my office commanded the support of all the political parties in the Assembly when it was sitting. It finished its passage at Westminster in March this year. What the politicians wanted to do was to set up an independent watchdog for children, funded by government, but free to comment and recommend what needed to be done to improve the lot of children. The overall aim of the Commissioner is very clear in the legislation. I am required to “safeguard and promote the rights and best interests of children” .

The legislation then goes on to set out two factors which will help me determine these rights – first the international standard of the UN Convention on the Rights of the Child – the international agreement which has the broadest support of any treaty. Only two countries have not ratified its provisions. The second factor is that I must take account of the role of parents.

The legislation makes few limitations on the kind of issues which I can look at. Indeed, it seems that immigration appeals is one of the very few areas where I cannot be involved. The way I would describe the scope of my responsibilities is that they extend to

  • All children in society – I have a role in relation to the issues that affect every child – their health and education, their right to play, to be safe and have warmth and shelter.
  • Children in Particular communities – I am concerned to help children across Northern Ireland, and to ensure that no child is disadvantaged because of where they live. But there are also particular groups of children with particular needs – we are considering one such specialised group today. Other groups are children from particular ethnic backgrounds; children who are in care, children caught up in the youth justice system.
  • Individual children - I also have a role to help individual children in the particular circumstances of their lives. Sometimes things go wrong for individual children because of a combination of things – some that are accidental, some that are failures in the system – that need help to put right.

What then can I do, with this responsibility for all these children in different circumstances? The legislation sets out three main functions:

  • Ombudsman – I have the right to get involved in individual complaints relating to things that have gone wrong or are not working for individual children or groups of children. This may mean helping a child or family through an existing complaints procedure. Or if that does not exist or is inadequate, then the Commissioner can investigate the complaints directly, and in the worst case where no satisfaction is obtained legal action can be taken.
  • Research and Service Review – I am keen that all the actions of the Commissioner should be based on thorough research. (Incidentally, I should say that is why I was so pleased to read Margaret Anderson’s work on the experience of families living with brain injury in Northern Ireland “High and Dry”, and to write the foreword for it). I also have the responsibility of initiating reviews of any service affecting children that I think fit. I may also be asked by Ministers or the Assembly to comment on particular matters of concern to them. Such inquiries can be informal or formal – the latter involving summoning witnesses and so on.
  • Communication and Participation – the legislation puts a lot of emphasis on communicating with young people, and ensuring that they can participate in the decisions that affect them. Too often those of responsible for children’s services fail to genuinely seek children’s views on what they would prefer. We must not abuse our responsibility to be professional in taking decisions with a failure to encourage genuine participation of young people.

People say to me “Well that all sounds very good and well intentioned but does the Commissioner have teeth?” In the light of my logo you might ask “Does the watchdog just bark or does it have a bite?” So a brief word about my powers… they are in fact similar to those of the High Court when I decide to use them. I can summons witnesses, demand papers and have the right to enter premises. But most of the time I hope I can secure change by agreement, rather than by force.

What then can or should the Commissioner do in relation to children with ABI? How will my role impact on the lives of the families and professionals concerned about this important area of health care?

I would suggest to you that in each of the function areas I identified there may be a role for the Commissioner. Let me explain:

  • As an ombudsman for children, I hope that if necessary, I will be able to help individual families if they are not getting the help they need. This might particularly apply after a child has been discharged from the acute hospital and the family are trying to cope at home. Sometimes things can go wrong with any number of support services, or issues fall between the cracks of different agencies. A small example of a case I am already involved in of a chronically ill child, not with ABI but with a life shortening illness. She is likely to live until her early teens. For her single parent family the real stress has been getting her Housing Executive home adapted for a wheel chair. After six months of being moved from their house so the work could take place, with nothing happening, the mother turned to me in desperation. Now the work is about to start. Of course, I want to be the last resort that families turn to – I would much prefer that all services become more child friendly which leads me to…
  • Research and Service Review – I can comment on broader issues in this area of ABI. From my conversations with professionals and my reading to date, I would like to highlight two issues of concern:

    REHABILITATION – it seems to me that while we have first class regional acute services for children with ABI n Northern Ireland, there is a real issue about what happens when children are no longer in intensive care, and especially when they are ready to return home. I would like to lend my support to both the establishment of a residential rehabilitation centre for children with ABI in Northern Ireland, and a much greater investment in training and support for agencies helping those children who are living at home. I do not see this as a choice between residential and community care. I believe we need both.

    ADOLESCENT HEALTH CARE – this is an issue that is broader than just children with ABI although it does affect them as well. I have become very concerned that there seems to be a gap in acute and community health care for those young people aged between 13 and 18. It applies to general medical and surgical provision, and it applies to psychiatric provision. Imagine you are a 14 year old stuck in a hospital ward with a room full of adults who may be much older than you and do not share your interests and concerns. At this stage I am simply flagging up this concern and I would be very interested to receive views from young people themselves, from parents and from professionals on this issue and what we could do to improve matters given there is a limited financial pot.
  • Communication and Participation – my concern here is that we genuinely do more to seek the views of children and young people themselves on their future treatment and especially rehabilitation. I am very concerned about ensuring that education services and especially schools are supportive and inclusive of those who have suffered from ABI and are returning to school. This may be especially relevant for those affected by an apparently less serious ABI but who have suffered a number of behaviour changes.

It has been a pleasure to have been with you today and to kick off your seminar. I do wish you well as you discuss the range of needs of children with ABI and ways of serving them better. I hope that as Commissioner I can support your important work. At times some of us may not be on the same side if I am pushing for change that affects existing ways of working; or investigating a complaint from an individual child. But I am sure we have a common interest in safeguarding and promoting the rights and best interests of children, and most of the time we will be working together for that goal.