Northern Ireland Assembly

What I am trying to explain is that this problem - while not as severe, so far, as in some areas of the British Isles and further afield - is escalating quickly and happening virtually on everybody's doorstep. Criminals who ply the nefarious trade not just of drugs but of all crime that amasses wealth are doing very well. In the past 12 months there have been two major drugs seizures with a street value of £1 million each. When somebody imports such things, he has to feel that he can afford such a loss. And those who feel that they can afford to lose £1 million must be quite wealthy. In this tiny, parochial society that always thought that such things only happened in the big, bad world, all of this is happening round the corner. Unless we can put the purveyors of this terrible and stinking trade into retreat, we will suffer the consequences for a long time. Worse than that, our children will suffer them.

In closing, let me point out that irrespective of what the rest of the United Kingdom does, we have to keep pace with our responsibilities to broader society. If that means putting people beyond their ease, making them look over their shoulder, making them suffer logistically, then we must do that. I do not believe we have any other option.

I reiterate my disappointment that the legislation is not proactive enough. However, I imagine that at some future date the Assembly - given the evidence that it sees outside and that some do not see, as one of my Colleagues has noted - will be brought back to this subject again and again. We have not seen the last child who will die from drugs. Let me put it as starkly as that: we have not seen the last child who will die from drugs. And when those deaths occur, the responsibility will lie in this Chamber. We might tell people that it is Adam Ingram's job as Security Minister or that the responsibility lies at Whitehall, but no matter what constituency we Members represent, it will be the responsibility of this House. Therefore, we will revisit this matter again and again, and we will get to the point where we will be fundamentally more proactive than we have been in the legislation that I commend to you now.

I think there is universal support for this report. A theme in most contributions was that the Committee worked to a very tight time frame, which was imposed by others. A strong message should go from the Assembly to the Northern Ireland Office and the Secretary of State that we should be given a reasonable amount of time to react to proposals from the Government. That is a theme which everyone can support.

I want to thank Mr Billy Bell for his comments. The Committee strove to reach a balanced report. There were differences of opinion in the Committee, although I do not think that they were as great as some contributors seemed to think.

Nonetheless, the Committee worked hard to try to achieve a balance. First, there was total agreement on the need for such legislation. Secondly, there was also total agreement on the Committee's reservations and concerns which can be seen at the end of its report.

I am disappointed that my presentation today has been criticised as being unbalanced. If there was an imbalance, it was not done deliberately on my part. I guard jealously the neutrality of chairmanship. As a Chairman, I have always tried to be balanced and to extend that impartiality to reports.

However, in a report it is important to present the Committee's arguments. A majority in the Committee took the view that article 6 should be supported. I fully accept that and I do not want to detract from the strong views expressed by members. The fact that I do not share that view played no part in my presentation today. I wanted to present a balanced view without damaging the views expressed in the Committee.

Mr Sammy Wilson mentioned "speculative trawling" - a term he attributed to me. That expression came, in fact, from the Law Society of Northern Ireland's submission. It was not a personal remark. So far as shattering the foundations of the legal system is concerned, surely even Mr Wilson accepts that that was over-egging the pudding.

The report is a good one. Good work was done by all the Assembly Members who attended meetings and made contributions. I accept the comment by Mr McNamee that when Orders in Council and this type of legislation are being dealt with, the value of this method of investigation can be questionable. However, it is the responsibility of the Government to take us seriously and to demonstrate that the introduction of legislation through Orders in Council is not an attempt to evade proper debate, consultation and participation by local legislators.

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Carraigfoyle Paediatric Support Unit

I am grateful to the Minister of Health, Social Services and Public Safety for her presence.

I should like to address the Assembly in my own County Down Gaelic, which may be a wee bit hard for some Members to understand, but perhaps they can look at Hansard afterwards.

D'oibrigh mise mar dhochtúir leighis i measc an phobail ar feadh 30 bliain. Is speisialtóir i bpéidiatraic mé. Agus anois tá lúchair mhór orm bhur n-aire a tharraingt ar Carraigfoyle Paediatric Support Unit. Tá an t-aonad iontach seo faoi lán seoil le 19 mbliana. Cuidíonn sé go mór le taca thar barr a thabhairt do pháistí míchumasacha agus dá gcuid tuismitheoirí. Tá mé millteanach buartha faoi na hathruithe atá á bplé faoi láthair agus tá na tuismitheoirí iontach míshásta leo fosta.

As a practising medical doctor - you will be glad to hear - who has specialised in paediatrics for the past 30 years, I have great pleasure in bringing before the House the far-reaching case of Carraigfoyle paediatric support unit. This superb unit has now been in existence for 19 years and provides a number of support services to disabled children and their parents. I would like to address the issue of the impending changes to its service, and the resultant dismay of parents.

The recent announcement that two major aspects of the work at Carraigfoyle would be altered leaves a tremendous gap in service in Belfast for our most disabled paediatric patients. The team at Carraigfoyle, including social workers and play therapists, has recognised the needs of the most severely disabled children in our society and has built an unrivalled support team for the children and their families during the critical pre-school years. More recently, the unit obtained even greater expertise in the evaluation and management of challenging behaviour, especially of children in the autistic spectrum. The care provided in Carraigfoyle far transcends anything that could be set up in a hospital. The total package far exceeds the sum of the parts. It is quite disturbing to think, therefore, that this model is now being discarded at the very time when other trusts in the United Kingdom are realising its benefits.

Another great strength of the Carraigfoyle paediatric support unit is that through careful planning, children and families facing similar difficulties are brought together and can share information, learn together and support each other. It is, therefore, quite unacceptable that the Pippins day support service and the Apple Lodge overnight respite service will both go.

Carraigfoyle staff have always demonstrated an appreciation of other services through their regular sharing of information with, for example, the education sector and the learning disability nurses. Nothing in our area even comes close to providing the model of care which Barnardo's has given, recognising and anticipating as it does the needs of our most vulnerable and pressurised families in their most vulnerable years.

My greatest worry is for the children with severe and complex disabilities. These children generally suffer from spastic quadriplegia, and most of them have severe learning disablities, coupled with epilepsy and feeding problems. Carraigfoyle's Pippins group provides a nursery on two mornings a week for these children in the two-year gap between their first birthday and pre-school provision in a special school. The support given to the parents of these children is invaluable. They especially appreciate the transport that is provided to the nursery and the great consistency in the staff who deal with their children, so that both the parents and the children become very familiar with them.

I am not aware of anywhere else in north Down and Ards that provides this sort of service. The only similar place I know of in south and east Belfast is Segal House, and it does not take children from the north Down and Ards area.

In Carraigfoyle the children have regular therapy from multidisciplinary teams and the paediatricians regularly see the therapists at the child development centre in the Ulster Hospital. Therefore, a holistic service is available to families, which would be difficult to reproduce in another setting.

Carraigfoyle has continually stepped in to provide support just when it was needed. By the time children are a year old, the parents are just starting to realise the extent of their problems and are already exhausted by a first year, which is usually packed with medical problems.

Carraigfoyle has also provided important therapy for children with autism. Barnardo's is planning to expand that work, which is also necessary as pre-school provision for children with autism is generally abysmal. While I agree that that service needs to be expanded, I am concerned that it will be at the expense of severely multiply handicapped little persons, who do not appear to be so politically fashionable at present.

The parents are extremely concerned about the loss of another facility provided by Carraigfoyle, and that is the overnight respite in Apple Lodge - a small unit in the Carraigfoyle complex. Apple Lodge takes three children a night, and one of its main features has been consistency in the carers looking after the children, meaning that the children are always cared for by a loving and familiar staff. Two staff are on duty at night, which is obviously important for the safety of the children and which reassures the staff themselves when dealing with fragile young persons.

It would be perverse to suggest that this is institutional respite in any way. Parents have always regarded it as a home from home for their children, especially in those early days before exhaustion has completely set in. Many parents are understandably anxious about leaving their children with anyone else. In Carraigfoyle, by the time they have overnight respite they usually know the staff and the system well, and that reduces parental anxiety.

The fashionable thing nowadays is to talk about respite, either with another family or in a child's own home. I have major concerns about this for the small group of physically frail, multiply handicapped little persons, who are mostly served by Carraigfoyle. First, respite in a family's own home is not likely to provide complete rest for parents, although it is better than nothing. It will be very difficult for the local trusts or Barnardo's to find people willing to take frail, multiply handicapped little persons into their homes. It is difficult enough to find enough foster parents for ordinary children, let alone for those who are likely to have convulsions, require tube feeding or are on multiple medications.

In an ideal world it would be lovely for children to have respite care with a skilled, competent carer in their own homes. However, that is not going to be possible. I am extremely concerned that those children are going to lose out. I am worried that respite care provision for children will follow the same path as provision for mental health patients and for children in social services care. If respite were reduced for those families, I would be worried that the children would end up spending more and more time in hospital, which is not at all desirable - I have worked there for most of my life.

Parents have also told me that a major advantage of the Carraigfoyle paediatric support unit is its simple reliability. They are not dependent on one respite carer who may be ill or have family illness or problems. In Carraigfoyle, someone will always fill in.

I must commend Barnardo's, which has provided a higher percentage of the funding for the Carraigfoyle paediatric support unit than it usually does for similar projects. Nevertheless, that means that if Barnardo's withdraws or redistributes its funding, the trusts will have to put in more resources.

My firm impression is that the board wants to have more "bricks-and-mortar" respite, to extend respite services to older children and to provide more services for autistic children without increasing any funding. I am, therefore, very concerned that there will be a small group of severely handicapped, vulnerable little persons and their families who will lose out. I am extremely annoyed that these parents, who already have enough to cope with, have been put in this position.

In liaison with my paediatric colleagues, whose lives have been dedicated to the health and well-being of children and young people, I must register my disapproval of any attempt to close Carraigfoyle or to reduce any of its services.

It is a pleasure to join with Dr Adamson in his support for Carraigfoyle paediatric support unit. He began by speaking in, I think, Ulster Scots. That confused me, because I thought that he was speaking Irish, but perhaps the Minister will be able to clarify that.

It was Irish.

I have a little Irish, but I would be afraid to use it here.

It was Ulster Irish.

I beg your pardon.

I am well aware of Dr Adamson's long experience of dealing with children with disabilities. Although I have had some experience in those matters myself, it does not compare with his.

I salute the work that Barnardo's has done in this regard, and in others, for children in Northern Ireland and far beyond. It has been providing this service for disabled children since 1981 - 20 years of high-quality service. In 1998 the Eastern Health and Social Services Board produced a commissioning document about integrating disabled children more fully into the community.

Dr Adamson spoke about children and families. It is very important in this day and age that respite care should be available for disabled people, be they adults or children. I appreciate that this can be a major problem, given the massive financial constraints on the Health Service. I know that the Minister would support these ideas in principle, but when it gets down to the question of hard cash the story is a different one. We have seen families who look after a disabled child, and any organisation that can help them on an ongoing basis deserves credit and our thanks. The love of a mother, father, brothers and sisters for a disabled child is immense, and people who look after a disabled child must get every possible support. Respite care is very important.

Dr Adamson also mentioned children who have epilepsy or convulsions, or who are on multiple medication. It takes a lot of diligent care to make sure that they are properly looked after. He referred to Apple Lodge. I am not familiar with Carraigfoyle, but I know that it has provided consistency in care and that people see it as a home from home for these children. Families have felt that a child was really being looked after, and it was more like a second home for them.

Dr Adamson has made all the main points, but I want to mention a few principles. It is very important that disabled children be looked after in their community, as far as possible. They should be able to be included in their community and to do the same things that non-disabled children can do; they should be able to live with their parents unless this is not in their best interests; they should be able to go to their local playgroup, nursery and school; they should be able to use the same leisure and community facilities as everybody else, but have alternative forms of care, where necessary, which are family-based; and they should be able to express their views and have them taken into account when decisions are being made about their lives. Finally, they should be able to receive the necessary kinds and levels of support to enable them to do these things.

Over the years, Barnardo's has provided these services specifically for disabled children, and Carraigfoyle is one such service. These are excellent services of the highest quality. However, while initially they were at the forefront of developments, they are now replicated in trust provision across Northern Ireland.

I support what Dr Adamson has been doing. If there is any way that the Health, Social Services and Public Safety Committee can be of help on this particular matter, we will be delighted.

I will not be speaking in Ulster Irish, Irish Irish or any other kind of Irish - first, because I could not; secondly, because I would not.

I congratulate Dr Adamson on drawing this issue to the attention of the Assembly. I have had some involvement with some parents who are seeking to persuade Barnardo's to reverse its decision and keep this facility open. I am not an expert in the present medical theories on the best way of looking after youngsters with severe disabilities and who are very fragile.

I come to this from two bases. First, looking at the strength of the case Barnardo's has made and, secondly, looking at the information given to me by those who benefited from this particular facility. I fear that Barnardo's has used the report commissioned by the Eastern Health and Social Services Board in 1998, wherein, quite rightly, people said that they did not wish those with handicaps to be isolated from society; they wanted them to be integrated as much as possible. I took a cursory look through the findings. Nowhere was there any indication that people wanted to see those specialist facilities that were supportive of families with extremely fragile children removed - nowhere. Barnardo's has used that as an excuse. A closer examination is required. If Dr Hendron is saying that the Health Committee might want to look at this, then one of the starting points might be Barnardo's own contention that it is only responding to public demand. I do not believe that there is any evidence for that.

Dr Hendron read out the list of principles laid down by Barnardo's - what it believes the rights of disabled children should be. All very worthwhile and high-sounding - the kind of thing we would want to support. However, I have had the privilege of attending meetings, more as an observer and listener than as one with a great deal of expertise. The parents I have heard have told me that the type of support services they are able to obtain at Carraigfoyle are a kind of lifeline.

In fact, one parent used that term. This "lifeline" enabled them to keep on giving support at home to their children, to meet the principles Dr Hendron read out. We cannot afford to ignore the views of the parents who, day in and day out, live with the disabilities their youngsters suffer from.

The third point I want to make is that Barnardo's has made a great play on the consultation document and on the views expressed by those consulted. However, the one thing I have found lacking in the document is the degree of consultation it had directly with the people who you would have thought it should have been responding to most - the parents who actually had youngsters at Pippin or Apple Lodge.

There is a huge gap in the degree of consultation. Many parents indicated to me that it was not so much a case of consultation, but simply Barnardo's communicating a decision it intended to make. I have received a document from Barnardo's today in which it tries to outline in detail why it has made the decision. It was based on the principle of caring in the community and on the fact that there was this input into the consultation documents. It is bereft of any indication that parents did not want it.

The irony is that one of the reasons it gave in the document for ending the service - which was sent to a number of Members who it suspected would be involved in this debate - was that the service has become so popular that many trusts have replicated it. I would have thought that if a number of trusts had identified that this was the kind of care parents were looking for, and had gone on to provide it, that was a reason for maintaining and not concluding the service.

Ultimately, when I look at this document I become cynical. Buried in the middle of it is the fact that the unit costs £350,000 per year. I ask myself a question which has been asked in the Assembly on several occasions. Is the commitment to care in the community more about saving money than giving disabled children and their families a better deal?

Moreover, Carraigfoyle is located just down the road from the Assembly. It is in an area of very prime demand for building land. It is on a prime site and I suspect it comprises about 4 acres. In east Belfast terms, it would be worth between £0·75 million and £1 million. One has to ask if economics is behind this decision. Does Barnardo's see a comparison between a cost of £350,000 per year and an income of perhaps £3 million or £4 million? That income could be providing it with a revenue stream rather than incurring it a cost.

I note that the Minister is in the Chamber today. One thing that we need to discover is whether or not the decision was driven in any way by an indication to Barnardo's from the Eastern Health and Social Services Board, or the various trusts, that they were no longer prepared to pay for the service. I tried to find that information and ascertain the facts, but I was unsuccessful. It would be useful to have that matter clarified. Did Barnardo's see that it was going to be more difficult to receive payment for the services being provided in these facilities? Did the trusts and boards indicate that they would use their own facilities instead of Barnardo's?

I want to comment on the human side of this issue. Dr Adamson outlined the services provided - nursery provision and some important residential care for one or two nights per week. This has enabled parents who had the intensive task of looking after youngsters to be relieved of that burden for a time. It has given them time for themselves and some respite; it has allowed them to get a breather or perhaps a night out. However, it is important to note that at the same time they knew that - to use Dr Adamson's term - their "fragile" children were in the hands of people who knew how to care for them and who had their children's confidence because they regularly attended Apple Lodge.

That is an important safeguard and lifeline for parents who give intensive care to their youngsters. It is not sufficient to say that they can be put into some kind of temporary foster care - I am not an expert on this, so that is probably not the right term - which allows them go to different people's homes for a night. I learned from many of these parents who love their youngsters so dearly that they were not prepared, or did not have the confidence, to take the risk of farming their youngsters out to people who might not have the expertise to look after them. Indeed, some of the youngsters might not be happy with strangers. The residential element is all-important. One argument made against it was that it is only available for children up to the age of 10. Surely that is better than not having it at all.

I do not want to go through any more of those arguments put forward by Barnardo's, which I regard as unsatisfactory. I hope that I have outlined the case to the best of my ability.

I trust that this debate will have several results. First, it should draw attention to what I feel is an arbitrary decision by Barnardo's, without sufficient reference to the parents of the youngsters involved.

Secondly, I hope that we can clear up some questions about the nature of the role, if any, that the Eastern Health and Social Services Board played in this decision. Was it the board's document that sparked this off? Did the Eastern Health and Social Services Board push Barnardo's in a particular direction because of recommendations in that document? Was there a financial consideration? Did the Eastern Health and Social Services Board indicate that its contribution to the facility was going to be cut off? I hope that we will receive answers to some of those questions.

Thirdly, I hope that this debate will give despairing parents real hope that their public representatives have taken their point of view to heart.

I have to declare an interest. A member of my family works for Barnardo's at Carraigfoyle.

Carraigfoyle has been going for 19 years, and I have been aware of it for nine years. For nine years I have known that the work that went on inside Carraigfoyle was wonderful. Thanks to the integrity of the staff I have not known much else. I cannot know all the details and the individual circumstances, because that is a very private matter between the parents and those who assist them in caring for their children. I am loath to go too deeply. I praise my Colleague for bringing up this issue. He articulated my sentiments in relation to Carraigfoyle better than I ever could - especially those that I understood.

I ask you, Madam Deputy Speaker, to pay due attention to my declaration of interest. My Colleague Sammy Wilson hit on some very important points. I think that he already knows that to suffer as the parents do is massively compounded when the value of your child's care is measured in terms of money or land. If it happens to be at the top of the Belmont Road, then it is both, is it not? That is the reality of the situation.

So far as I am concerned, the management of Carraigfoyle is a management. A manager is a manager is a manager. I am minded to tell what I know about the confusion that existed around Carraigfoyle when questions were being asked both by parents and staff. In the early days, smoke and mirrors seem to have been used quite effectively by the management at Carraigfoyle to cause confusion and to avoid answering the questions. It was almost like Chinese water torture: a drip on a stone, where nothing was actually said but at some point you worked out yourself that things were not going well.

Then came the admission Ian Adamson described: the abandonment of wonderful facilities that are not, to my knowledge, replicated anywhere in the immediate area of this Assembly, nor are likely to be, because they have their own ambience, I imagine. Certainly, the staff there are totally and absolutely committed.

To say that I care and that my party will support it is never enough when dealing with what Ian Adamson eloquently described as "vulnerable little persons". He described them not as disabled children, or as those who cannot talk or feed themselves, but as "vulnerable little persons". They are "wee people" who deserve everything that this society can give them.

I fear that we will never know whether this is the fault of management being managers on the basis of the difficulties that finances create for every manager, or whether it was sparked off by the Department. If we tried to find out, we would end up with the smoke and mirrors again, because the decision was not made in the open. The decisions were not made with the parents or the staff. In fact, you might ask where the decisions were made.

I cannot believe that anybody directly involved with Carraigfoyle was remotely consulted. That worries me, and perhaps when she speaks the Minister will clarify, at least from a departmental point of view, where the blame - if we can use that word - lies.

Either way - and Ian Adamson has summed this up - in respect of Carraigfoyle we have been offered a fait accompli. Unless there is a serious intervention, we have a fait accompli from which there is no way out.

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