Backbench business

Mary Macleod Excerpts

Thursday 14th February 2013 Westminster Hall

[Mr David Burrowes (Enfield, Southgate) (Con)]

I congratulate my hon. Friend the Member for Romsey and Southampton North (Caroline Nokes) on securing this debate. I was privileged to support her application to the Backbench Business Committee and, with others from across the House, to commit firmly to this debate. I hope that, at the very least, one thing that comes out of it will be a greater number of Members of Parliament pressing for improvement.

I, too, am straddling debates and trying to be in two places at once. I apologise, Mrs Osborne, for the fact that I must leave to go to the Marriage (Same Sex Couples) Public Bill Committee, which is continuing its deliberations.

All of us must declare an interest when it comes to eating disorders. All of us have to accept that we know a friend, family member or constituent who is dealing with the issue, and if we do not know one, we are out of touch with what, sadly, is the reality. All too often, that is a hidden reality, which is why I so welcome our shining a light on this important concern.

I do not come to the subject as a great expert, but I have been involved over the years—I share this with the Minister—in the issue of addiction, which is similar. I increasingly see great similarities between the issues. There is the profound loss of freedom; the diminished and, sadly, lost lives; the effect not only on patients, but on family members and all those around them; the health concerns, and the wider social concerns for society; and the whole process of treatment and recovery, with individuals, their family and society at large having to make a long-term, continual commitment. That matters, in terms of the quality of treatment and the support from family members and peers. All those issues should be promoted.

Although there are, sadly, the negatives—I will predominantly talk about the problems—I have been particularly impressed by the power of recovery. The positive stories of those in recovery are immensely powerful, and we must given them a much louder voice.

I have said that I am no great expert, but from those close to me and from constituents, I have learned that we cannot find one magic solution, or seek a simplistic or generalised one. Eating disorders are complex and contradictory, and in many ways there is ambiguity as regards recovery. That makes them particularly problematic, in terms of illness, mental illness and recovery. They are highly resistant to change; unlike with a physical illness, the patient wants to hold on to these disorders as a method of coping, so they are inherently hard to treat.

I want to concentrate on treatment and recovery. We must accept that we have a problem, and I would be interested to hear the Minister’s response to that. We have a problem in terms of the prevalence of eating disorders. They are on the rise in the UK, which has one of the highest rates of hospital admissions in Europe. The most vulnerable may well be teenagers, but eating disorders cover all genders and ages. Indeed, it is right to mention boys: 25% of those affected at school age are boys, whereas I understand that 10 years ago that figure was 10%. We also have an NHS problem—I have to say that—and a family problem in relation to how families are involved.

[Mary Macleod (Brentford and Isleworth) (Con)]

Does my hon. Friend agree that there might also be a problem in schools? We need to talk more about the issues with children at a very young age. Teachers can be part of that process by aiming to explain some of the issues and making young people feel more comfortable about body image.

[Mr Burrowes]

Very much so. The guidance is all on the side of early intervention. Indeed, the Government are very much on that side, and I am sure that there is a cross-party call for early intervention. That is a key area, and we must tackle the issue through not only better treatment, but profoundly better education and prevention, as well as culturally, through the media. That is an area on which we can give our views, which we are airing here, and where we can be part of a changed culture, but it really happens at an early age.

I particularly point to the pressure on services and waiting lists—an issue that has already been mentioned. The pressures on GPs and others for referrals to out-patient and in-patient services are growing. Anorexia and Bulimia Care—I pay great tribute to that leading national charity, among other good ones, on eating disorders—has told me that adult sufferers can wait up to nine months or even a year to receive treatment. That is profoundly damaging for adults, but think of young children who are susceptible to rapid weight loss waiting, at a time when they are growing. That wait for treatment while the right service is found could quickly put their life in danger.

Training in the complexities of eating disorders has been mentioned, but the general training that should be mainstreamed for GPs does not exist. Health professionals wrongly diagnose patients, mishandle their cases and lack sensitivity and proper judgment. Short time allocations for appointments mean that GPs cannot get to the heart of the physical and emotional needs of patients, who require time and cannot simply be moved on quickly. They need a proper rapport with GPs and investigations that involve the wider health community. With the pressures on GPs, are patients properly followed up, rather than allowed to slide into both physical and mental danger?

Sadly, among the most common causes of death are heart failure and, indeed, suicide, and the issue therefore needs to be grappled with properly and carefully. We must ensure sensitivity in the handling of that long-term involvement—because shortages in treatment services mean that patients end up falling back on pressurised GPs for the monitoring of their health and safety—but, sadly, that does not happen.

We have too few specialist in-patient units for eating disorders. The NHS has St George’s hospital, Tooting, a mental health unit largely for adolescents, which offers general mental health provision. Children who are already traumatised are going there; they are even more traumatised after going to units that do not have the specialists that we want them to see. We want more eating-disorder-only establishments. I will return to that in due course.

As has been mentioned, there is a profound issue about parents and carers. Parents raise the issue of their needs, and the important role that they play in recovery; those things are sometimes ignored or excluded, particularly if the child lives at home, as 16-year-olds often do. I understand that carer support services can be hard to find in several counties, and parents complain that they are simply shut out from the practical care of their children. That is totally contrary to the way that child and adolescent mental health services were set up to deal with such cases, but sadly, it happens all too often.

We have already taken up the issue of the statute with the Under-Secretary of State for Education, my hon. Friend the Member for Crewe and Nantwich (Mr Timpson), who has responsibility for children, and I look forward to meetings with the Minister of State, Department of Health, my hon. Friend the Member for North Norfolk (Norman Lamb) in relation to mental health. The Children Act 1989 seems to lead to a statutory anomaly, in that those aged 16 and over are given the right to refuse treatment for an eating disorder; there is therefore the prospect that they will be sectioned, and that that will be on their health record for life.

In effect, the Children Act enables GPs to tell children aged 16 and above that they can refuse treatment, which might sometimes undermine the work and values of parents. The number of complaints that I have received on that issue reflects the fact that it is a systemic concern. One set of parents told me about their 16-year-old child who was living at home—I know that this illness covers all ages and not just 16-year-olds. They were responsible for feeding and looking after her, but were excluded from her care. Such treatment might well have perpetuated the illness, and the dire straits that she was in; she may have been at the stage of trying to manipulate the system. These 16-year-olds, who are often intelligent and able young people, know the system as well as anyone else, and their manipulation of it can hinder the practical medical process of recovery.

Mental health legislation, including the Mental Capacity Act 2005, and the inherent jurisdiction of the High Court are interwoven in the treatment of this complex condition. We must also consider how we link in the organisations on the ground, such as CAMHS, to ensure that we involve all the relevant bodies in the health and care of our loved ones. Stigma and public misconception are also important issues, as the attitudes of the public and of health service professionals can hinder treatment.

I want to leave the final word to the experts—the families, who, sadly, have never wanted to be experts in this area. These are the sorts of stories that I hear all too often. One constituent became concerned about their daughter’s sudden loss of weight. They went to their GP, who made a referral to the local CAMHS team, which passed the matter on to the specialist eating disorder unit at the Royal Free hospital. The first appointment came up a couple of months later. The girl saw a consultant and dietician weekly or fortnightly. She attended various groups and family therapy sessions, but at no time did she receive any individual therapy.

Four months later, the child became abusive and violent towards her family. Despite attending regular hospital appointments, her intake of food was becoming more and more restricted. Her weight loss continued until she became skeletal. At times, the parents were in desperation. They phoned the hospital, pleading with it to admit their child, because they were reaching a point where they just could not cope. The response from the hospital was that in its opinion hospitalisation was not deemed necessary.

The parents felt completely helpless and as if they were battling the illness on their own. That went on until they found a helpline number for Anorexia and Bulimia Care, which proved to be a lifeline. A doctor eventually saw their daughter, who was so poorly that they were unable to get a blood pressure reading. There was no hospital involvement or admission at that stage, but the parents realised how important it was, and that their daughter needed to be admitted. Indeed she was admitted, not to an NHS clinic, but to Rhodes Farm clinic, which provides exceptional care. ABC underwrote the cost of treatment. We have been battling ever since to try to get the health service to take some responsibility for that cost of treatment.

Since then, there has been progress. No one would say that the girl is out of the woods, because it is a continuing process, but for her to be able to take food, gain weight steadily, feed the mind and the brain, and engage with processes has helped. The parents have said that without the support of ABC, they dread to think where they would be today; it saved their lives.

I have another example, which involves not lay people but a local doctor, who says:

“doctors know all about Anorexia and the best way to treat it, and the latest development in treatment—WRONG!”

She goes on to say:

“The help was not there. The doctors at best were sympathetic, at worst were downright dangerous.”

This is the mother of an intelligent and gifted daughter. She said that she could have been anyone’s 15-year-old, and yes, it could have happened to a boy as well as a girl. She was a normal loving child. The mother told me what happened:

“We went to doctors, paediatricians, bowel specialists. They found nothing wrong with her stomach. I told them of my worries. ‘Oh no. She is not thin enough to be anorexic!’”

The daughter was asked whether she was eating. “Yes”, she said. “Well, you need to eat more, sweetie”, her mother said. The daughter promised that she would try,

“But she didn’t. Always there was an excuse.”

The problem got worse. It is a familiar story:

“Every time we mentioned food or insisted on eating, she threw plates, broke things, kicked, screamed, destroyed her room. Her brain was now completely malnourished, starved of even basic nutrients. She had the look of a wild, caged animal. She told us…she was a bad person and wanted to die. ‘Please let me die mummy’ she would scream.”

Eventually, the parents got her to casualty and were told that she most likely had anorexia. The doctors said that a referral would be made to the CAMHS team. The parents were desperate. Their child had become psychotic and was in danger of starvation. The mother said,

“Even though I knew, hearing the doctor actually say ‘Anorexia’ made it real. ‘Anorexic? No way! She’s normal. She’s clever. She wouldn’t do this. She is not one of those silly girls!’ The guilt. The feelings of desperation, the sheer magnitude of what was happening was overwhelming. What a terrible parent I was! How could I have let this happen? How could I have not realised?”

There were no terrible parents involved in that story. This is an issue that must be tackled at an earlier stage, so parents do not go through that desperate nightmare. In conclusion, there is a good end to that story—well, not so much an end as a positive outcome.

Another parent who had the help of ABC and who used Rhodes Farm clinic said that they considered their daughter to be one of the lucky ones who has, through that excellent treatment facility, been given the chance of having a full life again one day. They said, “For every such one, there are 100 others who are not receiving the care they need or deserve for this dreadful illness, but hopefully they will.” As hon. Members on both sides of the House have said today, we can, hopefully, help to change that.