Eating Disorders
The final item of business today is a members' business debate on motion S3M-1331, in the name of Kenneth Gibson, on anorexia and bulimia. The debate will be concluded without any question being put.
Motion debated,
That the Parliament notes with unease that it is estimated that more than 80,000 people in Scotland suffer from anorexia, with 4,700 suffering from bulimia, and that the number of people diagnosed with eating disorders has increased by more than 15% since 1999, according to NHS Scotland; further notes that Eating Disorders Awareness Week takes place from 25 February to 1 March 2008; is aware that, despite guidelines issued by the health service watchdog in November 2006, Scotland still trails behind the rest of the western world in the treatment of eating disorders; is aware that the foremost expert on anorexia and bulimia in the United Kingdom, Bryan Lask, Professor of Child and Adolescent Psychiatry at the University of London, has voiced concern that the system for treating those with eating disorders in Scotland is "positively dangerous"; regrets that there is still no specific advice for GPs, despite every practice having patients suffering from eating disorders, and that only two private clinics in Edinburgh and Glasgow provide specialist care at a cost of around £3,000 per patient per week; believes there should be examination of why there is not one consultant specialising in eating disorders employed by the NHS in Scotland and that consideration should be given to how best to tackle this problem which can prove fatal and is deeply distressing both for patients and their families, and understands the need for ongoing research into eating disorders and their treatment.
Let me first thank the 21 Scottish National Party, Labour, Conservative and Green members who signed my motion and made this debate possible. I also thank Professor Bryan Lask and Dr Sarah Cassar, specialists in the field of eating disorders who are both in the public gallery, and Dr Malcolm Kerr, who is a general practitioner in Arran. All those medical professionals have provided invaluable assistance in informing my contribution to the debate.
Most of all, I thank my constituents from Kilbirnie who first brought this matter to my attention and who are also in the public gallery. Their 16-year-old daughter lies seriously ill with anorexia in Huntercombe hospital in West Lothian.
Eating disorders are illnesses characterised by physiological and psychological disturbances in eating behaviour. Cutting-edge research, pioneered at St George's in London and at Huntercombe, has proved that 75 per cent of patients with anorexia suffer from a fundamental brain abnormality, identifiable by magnetic resonance imaging.
Anorexia nervosa is a serious psychological disorder characterised by a pathological fear of weight gain, leading to diminished eating, malnutrition and severe weight loss. Over time, the weight loss becomes a sign of mastery and control and can become both obsessive and addictive. Anorexia can be life threatening, with a mortality rate three times that of schizophrenia or manic depression. Although anorexia will ultimately prove fatal for around 10 per cent of sufferers—often after many years—other illnesses ranging from organ damage to osteoporosis are likely for those who do not recover fully.
Bulimia nervosa is episodic, insatiable binge eating, often associated with fear of being unable to stop eating. Weight may be controlled by self-induced vomiting, excessive exercise and the use of laxatives, diuretics or other inappropriate medication, possibly interspersed with periods of anorexia.
Both anorexia and bulimia occur primarily in young women in their teens and early 20s. Both illnesses are often triggered by issues of confidence, physical self-image and self-esteem. High-achieving young women may be particularly susceptible. The incidence of concomitant depression is high, and a third will have suffered sexual abuse at some time in their life. Although anorexia and bulimia can be fatal, thankfully the vast majority of people fully recover. However, a minority will need specialist, intensive hospital treatment.
How many people suffer from eating disorders in Scotland? The BBC quotes a figure of 80,000 on its website, many of whom may have had the disease on and off for many years. Of course, many cases do not present, so numbers can only ever be approximate.
The impact of an eating disorder sufferer on their family can be devastating. In the case of my constituent—whom The Mail on Sunday called "Lucy" to retain her anonymity—her family were at their wits' end after having had to fight to obtain appropriate treatment for their daughter, who is now 16. In the words of her mother, Lucy is "physically and emotionally unrecognisable" from their happy-go-lucky daughter of only a year ago.
Local GPs were unable to provide the assistance that this young girl needed. Even when her weight plummeted to 5 stone 5 ounces, the family had to fight for the medical attention that their daughter needed. Lucy is now in Huntercombe hospital, along with five other patients from Ayrshire and Arran, fighting to recover. Why West Lothian? Because the only facilities available where national health service patients can be treated in hospital are at that facility—an NHS resource managed independently of the NHS—and at the Priory Hospital Glasgow.
My concerns in bringing the matter to the Parliament relate partly to the lack of hospital treatment available for eating disorders and the fact that such treatment is not available in specialist centres in other parts of Scotland such as Ayrshire—notwithstanding the fact that an NHS facility will be opened later this year in Aberdeen. Even in the community, where treatment is vital, resources are lacking. Treatment is multidisciplinary, leaning on the expertise of nurses, psychologists, dieticians, dentists and so on, and it takes place predominantly in the community. The role of GPs is pivotal.
The NHS Quality Improvement Scotland guidelines issued in November 2006 are authoritative but not well known in primary care. They incorporate recommendations from the National Institute for Health and Clinical Excellence in England. From advice given to me, it appears that guidelines should be modified specifically for use in primary care and promoted among GPs and other primary care staff. A review of the guidelines could be expedited to ensure compliance at health board level. A specialist service for eating disorders is vital, not just to treat the most severe cases but to promote excellence in this area of medicine so that an eating disorder service can be both community based and consultant led.
How should anorexic patients be treated? Treatment is complex and what is effective will vary from patient to patient. Treatment may include cognitive behavioural therapy, which challenges the patient's assumptions about body weight and image by suggesting more rational and positive alternatives such as healthy eating, monitoring one's moods, exploring healthy ways to deal with stressful situations and teaching the patient to think about food rather than weight. People who have the brain abnormality that has been identified can be treated using that form of therapy.
Other important effective treatments for anorexics include family therapy but, unfortunately, there are not enough qualified therapists in Scotland to provide that essential service. Nutritional education is important, too. It is significant that children are now being taught about healthy eating as never before. Hopefully, such education will give people a more rounded view of food that will augur well for the future. For anorexics, such information enables the design of eating plans that focus on maintaining a healthy weight.
It is crucial that sufferers are identified early and treated quickly and as close as possible to home. In Scotland, the core problem is the dearth of expertise and the lack of any training posts in the field. That issue must be addressed, although I appreciate that specialists cannot be made to appear overnight. Undoubtedly, Lothian NHS Board has the most mature eating disorder services, but even its waiting lists for hospital out-patient services range from one year to 18 months.
Of course, the minority of patients who need hospital care should receive that care within the NHS to ensure that primary and secondary care is integrated. Experts have told me that the £495 a day cost of treating an NHS patient in private clinics could be greatly reduced if contracts were signed with the Scottish Government. Ministers could then state expected outcomes and invest the savings in community care services to give GPs access to improved eating disorder services. Community care for patients leaving hospital is critical if patients are to be discharged earlier and relapse rates minimised. Such care must be provided to patients for up to one year after they are discharged.
Anorexic and bulimic patients are mostly young, vulnerable women. They deserve to be treated early on in their illness and with sensitivity. I ask the minister to assure me that steps will be taken to ensure that that happens sooner rather than later.
I welcome the debate that Kenny Gibson has initiated on anorexia and bulimia.
In preparing for tonight's debate, my starting point was to look at the Parliament's previous consideration of the issue. The Health Committee initiated an inquiry into eating disorders in June 2004, after receiving a petition on the subject. The petition called for appropriate treatment and resources to be made available across Scotland given that, without proper specialist treatment, eating disorders can become chronic and life-threatening.
As Kenny Gibson said, the 2006 report by NHS QIS made some impressive recommendations on the management and treatment of eating disorders. The report made so many recommendations that I cannot repeat them all, but they include:
"Care and treatment should be tailored to the needs of the individual … based on a multidisciplinary model …Individuals involved in school health should receive training … A choice of psychological treatments … Integrated care pathways …access to assertive outreach, day hospital care and inpatient care intensive treatment".
The recommendations are very impressive indeed, but what is not impressive is that very little appears to have been done since the report was published in 2006. The Health Committee's 2005 report also found that the provision of
"eating disorders services has not been treated as a priority by health boards".
A report from the mental health and well being support group noted that upwards of 100 adults might be expected to be admitted to hospital care each year in Scotland. Precise estimates for the number of patients with eating disorders in Scotland are difficult to calculate, given that it is likely that many sufferers do not seek medical help. The figure of 80,000 to which Kenny Gibson's motion refers is likely to be a gross underestimate.
Currently, we have no NHS specialist in-patient beds for anorexia nervosa in Scotland—although I very much welcome the plans for a new unit in the north-east of Scotland—despite the fact that the condition has the highest death rate of any psychiatric illness. Often, the only available option is for patients to be referred to unsuitable mixed psychiatric wards, which can have a detrimental effect on the patient's psychiatric and emotional state. Although specialist in-patient care is provided in Edinburgh and Glasgow, I understand that many patients are referred to hospitals in England.
Although in January 2004 guidelines were issued to all health care professionals in Scotland, as Kenny Gibson indicated, they do not seem to have filtered through to general practitioners, psychiatrists, teachers, dentist, midwives and others who come across eating disorders in their work. There are few community facilities in Scotland to support patients and their families after discharge, which frequently results in patients suffering relapses.
Approximately 90 per cent of all cases involve women. I am concerned not just about eating disorders themselves, but about the effects that they can have on future life and health. Those effects include poor circulation, brittle bones, infertility and kidney damage. Estimates suggest that 30 to 50 per cent of patients go on to experience long-term chronic problems such as the development of osteoporosis and tuberculosis. Eating disorders also limit significantly the capacity for reproduction of female patients. Support given at the time when it is needed can alleviate many future problems. I highlight again the potential problem of infertility.
Whereas there has been a lack of action—or insufficient action—on the issue in Scotland, the Welsh Assembly has taken dramatic and decisive action to combat eating disorders. It established a cross-party committee on the issue to compile a comprehensive analysis of eating disorders in Wales, including recommendations from the NHS in Wales on provision and support for patients and their families. The committee has managed to raise awareness of eating disorders across Wales and has called for proactive campaigns that specifically target young women in schools and universities. It has also promoted the need for increased training in the health sector to equip front-line staff with the skills to identify and to deal effectively and efficiently with patients suffering from eating disorders.
As well as establishing proper health guidelines for medical practitioners, the Scottish Government should endeavour to ensure that individuals in school health teams receive training in eating disorders and to establish communication networks. I hope that the Government's review of the responsibilities of school nurses and school health teams will address that issue. If a person with an eating disorder—especially someone who lives in the Highlands and Islands, the area that I represent—is unwilling to accept assessment or referral to secondary care, it would be wonderful if GPs could seek advice and support from specialists in eating disorders, through either a managed clinical network or another pathway.
I thank Kenny Gibson for bringing this issue to the chamber and hope that the Scottish Government will respond positively to the debate.
I congratulate Kenny Gibson on securing the debate. As he said, eating disorders are complex diseases and it is likely that they result from a combination of factors, events, feelings or pressures rather a single cause. Someone may be unable to cope at work or university or may have family stress. Sometimes eating disorders are related to seeing skinny models on the television, but that is an anecdotal, stereotypical view of the issue that is not always well founded.
Eating disorders are less about food than about control of what is happening in people's lives. I found it useful to look at some case studies on the internet. In one case, someone went on a diet during their second year at university. Within a year, she was not allowing herself to eat from any food groups and was living off grapes. She was living a horrible life, could not eat and was starving; all that she could think about was food. She could not get out of bed, go to university or hold a conversation—she just wanted to die. Why should someone deny themselves the basics of life? Those who are affected do not know the answer to that question, which has a mixture of psychological, emotional and physical components.
As Kenny Gibson said, physical changes take place as a consequence of eating disorders. We have to consider the illness as emotional, and to acknowledge that thinness is an outcome rather than the start of the problems.
The girl whom I mentioned says that she thought that she
"had to be thin to be loved, and to be successful and to be cared about. Thin is so much more than a tiny, four-letter word to anorexics."
For her—although not all anorexics are like this—it meant
"love, caring, success, popularity, intelligence".
To some extent, that is reinforced by images in society. One needs only look at the Oscars, where some of the women could barely be seen when they turned sideways—that is not true of me. The image that is presented is that that comprises beauty and success, and that if someone is not like that, they are not successful.
The girl changed her whole life—she did not get up until 3 o'clock in the afternoon, because that meant that there was less temptation to eat. She had a structure to the day of going to the shops to fill in time—anything, rather than sit down and eat. Her eating patterns became very formalised—she had the same plate, and the same amount of the same salad, at the same time every day. Whenever she digressed from that, she thought that she had failed. It was about control, and the food was controlling her.
Another girl was described as an atypical anorexic—she was rather flattered at the time, as she thought, "Well, if I'm going to be anorexic, I won't be ordinary." The point is, however, that all anorexics are atypical—each one is different. That woman had a great life, a happy marriage and a good job, but for some reason she began to lose confidence. A tiny little knock happened in her life—she did not get to travel to a job somewhere that she wanted—and that seemed to set off a chain reaction. She started to live by rules, and the rules became about the way in which she dealt with food.
She had fixed objectives—the case studies frequently come back to that—that were utterly non-negotiable, and she was negotiating with herself. She was negotiating with the fridge and the larder, and her hunger. She did not allow herself to do something else that she wanted to do, because that would give her a sense of failure. Before I move on, I will mention the other side of the story. The father—her carer—watched it happening. He says:
"Anorexia is a secret illness that thrives on deception and half truths … Anorexia defies logic. Its very essence, the idea that you can exist without food, turns all … assumptions on their heads."
His daughter, who was anorexic for 11 years, was lying to him all the time about whether she had eaten.
I have seen people in the Parliament—other members have probably seen them, too—who are not eating properly. They look as if they are eating food, and they fill a plate, but they just take little bits. There are one or two who are very thin indeed. Many years ago, when I was in practice in the sheriff court, I remember a young woman who was appearing as a lawyer before the sheriff. The rest of us were so worried about her that we spoke to the sheriff, who discreetly spoke to the law firm that she worked for. People do not like to interfere if they see somebody in that state, but we were driven to that because she looked so fragile.
We must consider what we can do to deal with the issue, which is complex. I welcome the north-east facility that is being introduced as a consequence of the work of Grainne Smith and the report by the former Health Committee, to which Mary Scanlon referred. We must also consider the day-to-day arrangements, such as educating GPs. The point about school nurses is also important. Neighbours and friends should not be frightened to raise the issue when they see that someone they know is not just looking a nice size 10, but is sliding right down to a size 6. We should not back away from such issues, as I stressed in the example that I gave.
I am grateful to Kenny Gibson, who has provided detail on the matter and done a lot of research. In my own patch, the Borders, which has a population of more than 110,000, there is hardly any activity. I do not believe that there are no young women there, especially in the 15-to-25 age group, who are either anorexic or bulimic and suffering from an eating disorder, and who need help. The subject is extremely interesting. The trouble is that when a committee publishes a report we think that we have dealt with the matter, but we have not. The Parliament needs to address that issue.
I congratulate Kenny Gibson on raising such an important issue, and welcome his constituents to the gallery. I wish their daughter well. I thank those who have spoken for their thoughtful speeches.
I confirm that we have already published guidance that specifically highlights the role of general practitioners and primary carers in the care of those with eating disorders and the management of eating disorders. I will return to that matter later. I also confirm that NHS Scotland has practitioners who are expert in eating disorder care.
It is notoriously difficult to calculate the exact number of people with eating disorders, given the likely numbers of those who do not seek help. That may be why the figure on the BBC website that Kenny Gibson cited is so high. We know that there are around 3,000 presentations of people with eating disorders in primary care annually, and that there are around 300 hospital admissions. That is a significant number of people.
We are raising awareness and working on reducing stigma to reach as many people as possible. It is important that services respond and meet the needs of all those who are affected, their carers and their families. No person who requires to be admitted to a hospital will be denied admittance. All decisions on care are taken by clinicians, and they have no artificial target weights in mind. Weight is an indicator, of course, but care decisions are based on the whole person's need in every case. What happened in Kenny Gibson's constituency case should not have happened.
I have listened to the genuine concerns that have been expressed, and accept we have more to do to achieve all that we want to achieve for those in need. That said, NHS boards and partners are making real progress with enhanced and improved services, which include a new NHS eating disorder in-patient service, which I shall say more about shortly.
NHS Quality Improvement Scotland has published clear, evidence-based guidance for all health care professionals on the management and treatment of eating disorders. That guidance recognises that the first point of contact for the majority of people with an eating disorder is the primary care team. A dedicated chapter on the role of the GP and the primary care team is included in the guidance. The importance of the earliest possible intervention and support for people with eating disorders is also emphasised. Kenny Gibson spoke about that. Such attention fits entirely with our published commitment to increased access to expanded psychological therapy services, the importance of which we recognise. All professionals should look at all times for any signs that suggest a disorder. That is routine for GPs, but it is important that that is done in other settings. Mary Scanlon made the point that signs of a problem can be spotted in schools. However, we should ensure that not only school nurses, but teachers, dentists and other health professionals are looking out for signs that suggest a disorder and that they are confident about what they are looking for. Wider observation has a part to play in early detection and referral.
The guidance was extensively distributed, including to all GP practices. It was followed last year by a linked patient guide that emphasised the role of GPs and contained specific advice for patients. It included specific advice for children, younger adults and families. That guide was distributed to all GP practices and more widely.
I want to offer a clear assurance about the expertise of consultants, GPs, nurses and other staff. Although perhaps they are too modest to identify themselves as such, there are consultant psychiatrists expert in eating disorder care who work day in, day out with and for NHS Scotland. I will name but one. Dr Harry Millar is lead clinician for the north of Scotland eating disorder managed care network. He was also influential in the creation of the new NHS in-patient unit and service that is to open this year at the Royal Cornhill hospital in Aberdeen. Furthermore, every NHS consultant psychiatrist, including those who work in adolescent services, is trained to manage people with eating disorders as part of the key core competencies to be achieved in their training programme. Continued attention is also given to ensuring that skills meet needs throughout consultants' continuing professional development.
I talked about managed clinical networks and integrated care pathways, and the minister mentioned that Dr Harry Millar is the lead clinician for the north of Scotland eating disorder managed care network. What area does the managed clinical network cover? Do people throughout Scotland have access to it, or is it just for the north-east?
I understand that it is just for the north-east, but the lessons from it should be learned elsewhere, which is what we always want with managed clinical networks. The idea is that those skills and that expertise should be rolled out to other areas. I will consider what lessons can be learned from the work that is being done in the north-east and whether—to answer Christine Grahame's question about the Borders—we should develop managed care and clinical networks in other areas of Scotland. I will follow that up.
GPs and their practice teams assess their education and training requirements on an on-going basis in response to the needs of patients, as they should. NHS boards, local specialist and community health teams, NHS Education for Scotland, the faculties of the Royal College of General Practitioners and the deaneries all play their part. NHS Education for Scotland is taking the matter further with its plans to develop new eating disorder education and training resources. I hope that that offers some reassurance on the on-going and available expertise, training and education.
Judging by the experiences of the people who have contacted me, I believe that there is still a real issue on the ground about whether people are tapping into the guidelines. It is one thing to issue guidelines; it is another matter whether people are using them on a day-to-day basis.
The minister has talked about there being 3,000 presentations a year. However, somebody can have anorexia for 20 years, which is probably why the figures are so disparate. If there were 3,000 presentations a year over 20 years, that would give a total of 60,000 sufferers—and the figure could be even higher.
Kenny Gibson raises an important point. I would be willing to undertake a review of the uptake of and knowledge of the guidelines and to enter into discussions with the Royal College of General Practitioners about what other support might be offered. I am happy to take that forward from the debate this evening.
The vast majority of care for those with eating disorders is provided in community settings through primary care and community teams, including social work services and the voluntary sector, with access to hospital when it is required. To deliver the best care, we recognise the worth and value of all partners, which means working and contracting with independent providers. To that end, we are discussing appropriate arrangements on national price, priority and quality with the independent providers for the care that they provide. That is what Kenny Gibson called for, and I hope that he is reassured on that point.
I mentioned new NHS eating disorder services in Scotland. I am delighted that work is already under way to establish the north of Scotland regional in-patient service at the Aberdeen Royal Cornhill hospital, which is due to open this year. The 10 new in-patient beds will form part of the north of Scotland eating disorder network. This new NHS provision is a significant development and offers a clear signal of the Scottish Government's and NHS Scotland's commitment to best care. I am sure that there will be lessons to be learned from that development.
By the end of the year, NHS Scotland will have access to approaching 60 specialist eating disorder in-patient beds and will fit within the spectrum of care to which I have referred. The new NHS facility, service and approach are matched by the ambition and provision shown in other areas and by other partners. For example, NHS Lothian has a well-established eating disorders community support service, which provides the right support and interventions at the right time. NHS Greater Glasgow has a new community-based service that provides comprehensive, holistic care to those who have an eating disorder. The best local approaches are maintained and informed by multirepresentative eating disorder regional care networks.
Those services are particularly important resources for children and adolescents throughout Scotland. Adolescent psychiatry is where the majority of individuals with an eating disorder will be seen, and we are committed to increasing the number of specialist NHS adolescent mental health in-patient beds from 44 to 56 by 2010. We are also, of course, continuing to raise awareness and to reduce the stigma of eating disorders. The see me campaign to eliminate stigma and discrimination adopted an image of a lady wearing a necklace that implies that she is anorexic, with the aim of encouraging people to see the person, not the label. That theme is continued in our more recent campaigns.
There is more progress than I can mention in the time available to me but, in closing, I assure members again that we do not underestimate the need for further change. We have published clear, concise, current guidance for practitioners and patients and will welcome any advice on reinforcing that further. I have indicated to Kenneth Gibson that we will review the uptake of and knowledge of that guidance. We will continue to work with NHS boards and their partners to deliver better led, managed, organised and co-ordinated eating disorder services across the public and independent sector.
Meeting closed at 17:35.