Child and Adolescent Mental Health Services

Russell Brown Excerpts

Wednesday 7th July 2010 Westminster Hall

[Mr Robert Buckland (South Swindon) (Con)]

Thank you, Mr Benton, for giving me my father’s name. Robert Buckland is my true name. I am grateful for the opportunity to speak in this debate, and I congratulate the hon. Member for Stalybridge and Hyde (Jonathan Reynolds) on an excellent and comprehensive analysis of the report from the National Autistic Society, which many of us have read and found extremely useful.

I declare an interest because, like the hon. Gentleman, I am the parent of a child on the autistic spectrum. My experience, although initially negative, is something that I have decided to try to be positive about, again like the hon. Gentleman. Having had the honour of being elected to this place, I regard it as my duty to raise those experiences, talk about them and do whatever I can to advance the cause of children, young people and adults with autism, the autistic spectrum disorder and Asperger’s syndrome.

The “You Need to Know” campaign touches on an issue that all of us, whether Members of Parliament, parents, professionals or members of the public, may have experienced in recent years, as the extent of the diagnosis of autism has dramatically increased. A group of individuals and their families feel utterly isolated because their experiences have, in the words of the hon. Member for Mid Dorset and North Poole (Annette Brooke), resulted in their having to scream and shout from the rooftops, bang on doors and adopt behaviour that they might never have contemplated at the beginning of their journey. I simply ask the eternal question: why does it have to be like this? Why on earth are we still in this position in the second decade of the 21st century? The National Autistic Society was founded nearly 50 years ago. Medical research on, and analysis of, the condition that we now know as autism began as long as 70 years ago. I appreciate that the calls on the public purse are immense, but progress on this issue is too slow, and that is betraying an entire generation of children and young people.

Provision for the transition from youth to adulthood is—I hesitate to say this, but I will press on none the less—nothing short of scandalous. The excellent provision in the education and children’s services sector suddenly vanishes when the young person reaches the magic, or should I say tragic, age of adulthood. Time and again, I have met constituents who are crying out for the help and support that they thoroughly deserve, but who are not getting it. They understand and are conscious of the fact that they are increasingly a burden on our society, but it should not be like that. They should not be a burden on the rest of us; they should be making a valuable and meaningful contribution to our society. We should not forget the talents, idiosyncrasies and amazing abilities of children and young people with such lifelong conditions. I talked about the initially negative experience of learning and understanding that one’s child has autism. As I said at the beginning, however, the positive aspect of such conditions must not be forgotten. These children and young people are not a burden; they add to the mosaic of human experience, and we need to understand and embrace that as we address the questions.

I know that we have touched on this point in the debate, but we should not forget the position of parents and carers of young people with autism. All of us with experience and knowledge of the position of parents and carers will understand that the pressure on them is often intolerable. They often need support and access to mental health services themselves if we are to avoid some appalling scenarios. In one appalling case in south Wales recently—I will not go into it, because it is sub judice—a parent was detained under the Mental Health Act 1983, and a young child lost his life. In the second decade of the 21st century, that is unacceptable in any book.

Hon. Members have eloquently outlined the need for training, and I need not repeat what they have said. Professionals who are outside this place, or who may be present, will say that they are doing all they can with limited resources to deal with the huge variety of problems they are presented with as paediatricians in the national health service or as mental health practitioners. I understand that resources are tight, but as has been said—I make no apology for repeating it—there is huge potential for saving money by intervening early and recognising problems. In these times, when finance is understandably the Government’s paramount consideration, is that not a strong and persuasive argument for supporting provision?

[Mr Russell Brown (Dumfries and Galloway) (Lab)]

My hon. Friend the Member for Stalybridge and Hyde (Jonathan Reynolds) mentioned west Berkshire. As a result of the pressure that I and others in my locality have put on our local health board, we now have an integrated ASD network, with speech and language therapists and a whole host of professionals. The hon. Gentleman has hit on the central point: early intervention, with good, sound, solid professionals working together as a team, will make the difference. That can save money in the long term, but, more important, it can alter the quality of life for young people and their families.

[Mr Buckland]

I thank the hon. Gentleman for that important intervention, which leads to the point that I was about to make. We could spend hours in a chicken-and-egg argument about whether mental health conditions precede autism. Let us not forget that autism is often accompanied by physical disabilities and a range of other conditions, so it is a complex area. Similarly, mental health problems will accompany autism in some families for hereditary or genetic reasons, so it is probably not worth getting into the chicken-and-egg argument.

There is, however, no doubt that a number of young people who present themselves to CAMHS will have had an imperfect or late diagnosis of their condition, and I am afraid that my personal experience in that respect has been rather negative. Experienced paediatricians, whom I will not name, because they are distinguished in their field—one in particular is very distinguished in the medical-legal field—told me that diagnosis at two or three was not possible for autism and ASD. I was a mere layman in those days, and I had not made the journey that I have now, so I accepted what I was told at the time, but I learned later that it was not the case. If that attitude is still prevalent, we have a problem. I do not want to criticise health care professionals, who do a wonderful job, but the point being made by the National Autistic Society is that we need more training, awareness and understanding. That is all we ask for in this debate.

The hon. Member for Mid Dorset and North Poole asked the proper question about transition provisions. We now have the Autism Act 2009, and we await the statutory guidance, which is all-important in fleshing out the bones of the Act. The guidance is key, and we need the Government to give a clear steer in it as to how we manage the transition from childhood to adulthood. That is a key time, but there is, as I have said, a scandalous dislocation in provision, which needs to be dealt with properly.

As the hon. Member for Dumfries and Galloway (Mr Brown) so eloquently said, we need to look at key intervention at the earliest stage. A lot of the mental health conditions that accompany autism can be avoided through early intervention, which would mean that there was less pressure on CAMHS and less of a crisis in the key early and mid-teen years.

I know that other hon. Members want to contribute, so I will finish on this point. We have seen some excellent examples of provision, and west Berkshire has been cited. In authorities such as mine in Swindon, the PCT and children’s services are integrated and work very well. They are starting to do the outreach work in CAMHS in the primary sector that will help to identify problems and improve early intervention. However, although that integration is all very well, the question, which the hon. Member for Mid Dorset and North Poole posed, is whether there is proper integration with adult services. Therein lies the problem, and more work needs to be done.

I am grateful for being allowed to contribute to the debate. I hope that this will be the first of many contributions that I make on the subject in the years ahead. I thank you for allowing me to speak, Mr Benton.

Human Tissue (Availability)

Russell Brown Excerpts

Wednesday 23rd June 2010 Westminster Hall

[Mr Russell Brown (Dumfries and Galloway) (Lab)]

I attended this debate not intending to speak, but I congratulate the hon. Member for East Dunbartonshire (Jo Swinson) on securing it.

I wish to talk about the terrible condition of Parkinson’s disease. Yesterday evening I was making my way home and called my wife, as I routinely do. She informed me that a family member and good friend of ours, who is on holiday in Malta, had suffered an aneurysm, and is on a life-support machine until her family can get to her later today. I have known the lady for many years, and I know that she wants her organs to be donated to medical science, but tragically, she is hundreds of miles away from her family. That quickly brought home to me the fact that we need more research, and that more organs need to be donated to allow research to go ahead.

Parkinson’s disease, as we all know, is a terrible, debilitating condition. Every hour, someone in this country is told that they have Parkinson’s, and, if anything, the situation is getting worse. Parkinson’s UK is an admirable organisation doing its utmost to battle against the condition. Since 1969, it has spent over £45 million on groundbreaking research. At the start of the year, it was supporting 90 research projects worth over £15 million. Parkinson’s UK believes that it should be made easier for researchers to gain access to donated organs.

To be usable for research purposes, the brain must be harvested within 24 hours; however, all too often there are obstacles to that. For example, hospital staff are often reluctant to harvest organs without a death certificate—rightly so, on occasion. When someone dies over the weekend, there is often no one available to sign a death certificate, meaning that the organs, including the brain, cannot be harvested before they deteriorate and become totally unusable. When that happens, Parkinson’s researchers miss out on resources vital to developing better treatments and a cure. It also means that the wishes of the deceased, including those carrying donor cards, and their families simply cannot be followed. Parkinson’s UK is therefore calling for guidance for hospitals on the importance of harvesting organs, including the brain, quickly—within 24 hours—to avoid those obstacles. It also calls for greater public awareness of the importance of donated organs in medical research—an issue that the hon. Member for East Dunbartonshire raised.

The brain is the principal organ affected by Parkinson’s, and it is due to the death of specialised nerve cells in specific areas. However, the condition can also affect other parts of the body. There is emerging evidence, which the hon. Lady touched on, that early pathological changes found in the brain may start in the gut. The condition may actually start there and then spread to the brain. Much more research needs to be carried out in that area to investigate what is happening.

Parkinson’s UK funds a brain bank that makes it possible to look at changes that have happened in the brain once a person has passed away. However, it is also necessary to look at other organs, from people with and without Parkinson’s, particularly when they are alive, if at all possible. That would make it possible to correlate a person’s symptoms with any specific changes within the body; that is as important as looking at cells. A key challenge is the shortage of human tissue, including intestinal tissue from the gut, that is available for research. When it does become available, all too often there are difficulties associated with obtaining it. Parkinson’s UK would welcome a tissue database, as it would enable researchers to locate tissue more easily, thereby obtaining maximum benefit from it.

[Mark Tami]

Does my hon. Friend agree that we need the media to address research properly and to explain why it is being done? Too often, particularly in the tabloid press, we see headlines like “Frankenstein science”, and stories on experimentation for the sake of it, which has never been the case. Such language further undermines the likelihood of people giving consent; they would be more likely to do so if they were fully up to speed with why research was being carried out.

[Mr Brown]

I thank my hon. Friend for raising that point because I was going to come on to that issue. He made it abundantly clear that, regrettably, on too many occasions much of what we encounter day to day, especially in this arena, is driven by media hype and scare stories. His point is spot on. As the hon. Member for East Dunbartonshire said, the situation regarding presumed consent and everything surrounding it is delicate. New Members and those of us who were here previously will encounter over the coming months and years a significant amount of correspondence from people who are deeply concerned about organ donation and the provision of tissue. My hon. Friend the Member for Alyn and Deeside (Mark Tami) is right: when we tackle issues such as this one, we have to have open, honest and sensible adult debate, not driven by hype that, frankly, terrifies people.

I do not wish to say much more in my short contribution. Suffice it to say that the debate is very important indeed, and even that is probably an understatement. I have covered Parkinson’s disease, and I would like the Minister to address the issues surrounding that, the tissue database and how we overcome problems. I suspect that they occur too often, when the harvesting of organs needs to be dealt with very quickly—within 24 hours. How can we handle that better to ensure that we meet the wishes of those who want to give organs at the end of their life to save the lives of others and for research? Making that decision was a significant step for those individuals and we should do whatever is humanly possible to make it easier to respect their wishes.