|
In this issue…
- Scottish ED Carers’ Support Day – Full House! Report
- North of Scotland Managed Clinical Network
- New Services in Glasgow
- Research presentations at SEDIG –
Jean Corr
Michelle Conway
Professor Bryan Lask
and research requests from London.
Next SEDIG meeting – 17th April 2008
Secretary
C/o Binny House
Ecclesmachan Road
Uphall
West Lothian
EH52 6NL
Please send SEDIG Newsletter items to our new editor –
Jan McDonald – Chaika05@aol.com
Jan McDonald has been a ‘carer’ member of SEDIG for several years, and has recently been appointed to SEDIG committee. She was involved in the organisation of the Carers’ Support Day in November 2007.
“With no information when my daughter was ill, let alone support, I only then began to understand the phrase ‘out of my mind with worry.”
“I've compiled a list of Scottish ED services, but this is now 1 year old. I hope to update this at the next SEDIG meeting on 17th April, then I will hand it over to the web designers to put it on the SEDIG web-site."
Anyone wishing to send their new or updated details to me would be appreciated –
katypark@prioryhealthcare.com
Thank you all!”
Katy Park
“It was good on both days to see and hear people being open, asking questions, avoiding blame and guilt, admitting difficulties and working together to try to provide the support needed by the unlucky ones suffering from these dangerous disorders.”
Notes taken by ‘Father of a Patient’ –
The Animals
The Science
Working with the professionals
Support groups
Relaxation
Relationship between carer and sufferer
“Every talk, session or workshop was so interesting and valuable, it was very hard indeed having to keep moving on, to remember to stick to our planned programme; if one item over-ran, all others would be affected.”
“Managed Clinical Network – a linked group of health professionals and organisations from primary, secondary and tertiary care, working in a co-ordinated manner, unconstrained by existing profession and Health Board boundaries to ensure provision of high quality, clinically effective services throughout Scotland.”
Health Dept, 1999
“The MCN seeks to drive improvements in inpatient care, supports guideline implementation, will develop clinical information systems and has a key role in co-ordinating training, education and supervision. The MCN is also involved in supporting local health boards with their plans for local services and has been involved in discussions with central planners regarding service developments.”
The work of the MCN is overseen by a steering group with representation of a range of different clinical disciplines and management expertise from across the North of Scotland.
The network is committed to seeking the views of users and carers on how best to develop services and a number of people have already contributed very helpfully to this process. It any other users and carers wish to be involved in the activities of the network then we would be very pleased to hear from them.
Contact – linda.keenan@nhs.net
“Jean was interested in finding out if the home dietetic assessment that she does routinely within her work with the ANITT was more accurate than a dietetic assessment in out patient clinic and she also wondered what patients really thought about having such a detailed assessment at home.”
“The follow up questionnaire showed that participants kept a more accurate food diary, found the home assessment more useful, and considered home assessment to be a beneficial aspect of their nutritional care.”
“Participants found that the increased contact with the dietician, completing the home assessment and observations in the home to be beneficial, enhancing the traditional method of a time limited session, usually 1 hour in the outpatient setting.”
“Along with observation in participants home and increased contact with the dietician over the study period, it could be concluded that patients were able to keep more accurate food diaries as a result of this.”
“In this research, it was suggested that the temporal region of the brain may be affected in some patients with AN and as a result they may then have some difficulties with certain skills which involve using this part of the brian.”
“My motivation for undertaking this study comes from working as a psychotherapist in a specialist eating disorder hospital in Scotland. I have found it difficult to know what people who have recovered say about their own recovery process and particularly how psychotherapy helped them.”
Carers of people with AN have high levels of distress linked to both unmet needs and difficulties in the caring role, and thus may inadvertently contribute to their loved one’s illness.”
“This was designed to reduce carers’ distress and help them support their relative more effectively through improved understanding of the illness, skills communicating with the sufferer, and problem solving.”
“With the use of new technology it’s now possible for people living at great distances from research centres to have the opportunities to take part in studies. Please pass on the e-addresses to any carer or sufferer you know who might like the opportunity of taking part in these fascinating research studies.”
Editor
Thanks!
I’m sure Jan McDonald, who now takes over as new editor, will continue to benefit from the same support.
To ensure a complete picture across Scotland, please send items of interesting news from your area – east, west, north, south - to Jan at Chaika05@aol.com
|
Scottish ED Carers’ Support Day – full house!’
Following months of flying emails and a few meetings fitted into everyone’s work, home and various other commitments, on the evening of Friday 23rd Feb the small group of organisers set out the chairs in Edinburgh CAMHS (formerly YPU) games room; laid out the leaflets and books lugged there by train and bus; drew and set up the signs to point the way for participants next morning; checked numbers, arrangements, shopped for breaks and lunchtime….how many teabags would be needed, how many cups, what kind of fruit…carried the bags in, set out tables, crockery…
Would our aims - of ‘providing and sharing information through talks and workshops on Coping with Family Life Under Stress, Working Together to Provide Effective Care, and Coming Up for Air: Carer Survival’ – be met for those we, all family carers ourselves (current and of recovered loved ones), had planned for others?
How would this venture, a first ever in Scotland, go? All 40 places – max for the venue – were booked; speakers and carers were travelling from all over Scotland and beyond for a very full day programme the next day, talks and workshops, sharing experiences of what they’d found helped their loved ones, what had been hard and difficult learning situations…
‘Father of a patient’ wrote of his impressions after the day -
The NHS Direct website had warned me at an early stage that anorexia nervosa was “a serious and complex illness”. This simple but daunting description stayed in my mind as I read books to find out more, making me feel that here was a problem I could do very little to help solve.
A friend suggested that I sign up for the SEDIG Carers Support Day at the Royal Edinburgh Hospital Young People’s Unit in late November. Searching the web, I also found about the Sixth Annual Conference on “Working together – Adolescent Eating Disorders” to be hosted by the Royal College of Psychiatrists in London in early December. The 15 hours of listening and learning during these two days included lectures from medical experts, discussions with other carers and, in London, workshops where young patients from the Phoenix Centre in Cambridge tried to explain how the illness affected them and what others could do to help.
In Edinburgh I found myself sitting by a piano with a brass plate inscribed in memory of a girl who had died and in gratitude to the Young People’s Unit for their support. This was chilling: I knew the mother in a professional capacity and had no idea that she had lost a daughter. In London I met a stressed psychiatrist who said that one anorexic patient was the equal of eight others and that having more than three on one’s list could “destroy you”.
These bleak encounters were not the order of either day, although despair, anger and hand-wringing surfaced from time to time. In Edinburgh Gráinne Smith and her team had created a programme that was so busy and so full that positive energy was soon created. With the opening speaker, Professor Janet Treasure, one knew one was in expert and interesting hands and a brief visit to Google later indicated that the research and methods developed by her and others at the Maudsley Hospital in South London are of massive international significance. In London the day began with another Maudsley scientist, Professor Ulrike Schmidt, describing new internet-based treatments for young people with eating disorders, a programme that Gráinne herself is involved in. The day ended with an incisive talk from Susan Ringwood, Chief Executive of ‘beat’, describing her work on changing practices in the beauty and fashion industries.
In workshops and discussions in Edinburgh it was chastening to see the trauma, guilt and obvious loneliness felt by some carers and the patience of others. People react differently to dangerous illnesses, but it must be helpful for all to share experiences and talk with others. All children – not just our own - are vulnerable and working in groups seems a good way forward. At the end of the day I heard someone comment that there hadn’t been much practical advice…. On the train home I searched through my notes, wrote up a list of “21Practical Steps to being a Successful Carer” from what I had learned on the day and sent it off to Gráinne.
In London I opted for two workshops, each 90 minutes long, where we came face to face with the sufferers themselves, two brave 15-year-old girls from the Phoenix Centre supported by Dr Tony Jaffa, Consultant Child and Adolescent Psychiatrist, and in the afternoon two slightly older girls from the same Cambridge unit who had organised their own very intelligent presentations. It’s sometimes difficult to grasp the reality of what one reads in books and it’s too easy to distrust or dismiss. Hearing first-hand about days dominated by food, about the power of voices, about mealtimes as battlefields, about good days and bad days, about the importance of routines, about difficulties with friends who comment on how you look, about guilt and anxiety, and about not being taken seriously was again chastening but also immensely helpful. All of the girls were thoughtful and responsive answering questions from professionals and carers so much older than they were. And they were forthright too: “Don’t try to help me on a bad day”; “You feel better when you know that others know and care”; “I hated having to explain everything again to new keyworkers or consultants”; “Don’t ever say ‘I understand’ because you don’t”.
It was good on both days to see and hear people being open, asking questions, avoiding blame and guilt, admitting difficulties and working together to try to provide the support needed by the unlucky ones suffering from these dangerous disorders. Gráinne’s final talk on “Coming up for Air: Carer Survival” at the end of the Edinburgh day was an important reminder that carers too need to learn how to cope and live with anorexia and bulimia.
By ‘Father of a patient’
Also by ‘Father of a Patient’ - 21 Steps to being a Successful Carer’, written following Edinburgh Carers’ Support Day.
Practical steps to being a successful carer
Notes from the SEDIG Carers’ Day 24 November 2007
The Animals
- Avoid being a kangaroo (too protective), a rhinoceros (too aggressive), a jellyfish (letting all emotions show through) or an ostrich (ignoring the problem).
- Instead be a dolphin or a St Bernard, giving support when needed.
- The C’s are important: be calm, caring, compassionate, consistent, curious and a coach. Don’t be afraid to admit being confused.
The Science
- Be aware of the research being done into eating disorders and risk factors such as compulsive traits, cognitive inflexibility, impulsive traits, and anxiety traits.
- Be aware that these and eating disorder traits themselves will be shared within families. Avoid behaviours such as excessive attention to detail which will reinforce similar traits in the sufferer (the 2.5 potatoes syndrome).
- Understand the biological and physiological basis of eating disorders and the relationship to addictions of other kinds.
- Understand about the pathways and patterns which are the basis of cognitive behaviour therapy.
Working with the professionals
- Leave much of the work to them; don’t try to be nurse, therapist and carer.
- Be aware of your right to intervene and to communicate with professionals if you are aware of a problem.
- Try to understand the complex issue of confidentiality.
- Keep dietitians informed of past likes and dislikes regarding food.
Support groups
- Join or form a local support group.
- Join beat.
- Be ready to share problems with others in similar positions.
Relaxation
- Remember that anxiety is contagious.
- Learn relaxation strategies and take active steps to de-stress.
- Use humour.
Relationship between carer and the sufferer
- See and treat the individual as an individual.
- Actively listen; affirm; encourage new perspectives especially on non-anorexic topics.
- Adopt a “Let’s try” approach.
- Learn to consider a mistake as a treasure.
-
Editor - Thanks, Father of a Patient, for time taken to write this.
Listening to the questions and discussions around me in response to Janet Treasure’s excellent talk about the work she and her Maudsley team do with carers, to support them in building and sustaining the most coordinated and effective home care possible, reminded me again of how much I wish I could have had such information and support during my daughter’s illness. Watching the behaviour and personality of someone you’ve known and loved all her life - who had as a child the well-deserved nickname of Tigger - disintegrate under the onslaught of anorexia/bulimia, was like living in a nightmare: nothing seemed to make sense any more. With no information when my daughter was ill, let alone support, I only then began to understand the phrase ‘out of my mind with worry’.
Now, having listened to so many other carers over ten years or so on local NEEDS Scotland and national EDA helplines, at meetings and conferences, I know that – at least relatively speaking! – we got off lightly. And my daughter has recovered, is working fulltime, living again independently, again enjoying friends and social life.
How I wish I could have learned during those nightmare years of her illness without information, about the value of being a Dolphin swimming alongside and trying to guide - rather than a Rhino who charges in to try to sort everything with logic; or a Kangaroo who wants to care and protect completely; or an Ostrich who sticks head firmly in the sand and pretends everything is ok. At the time, I felt I was blundering about hoping that whatever I did as Best Effort in difficult/puzzling situations with seemingly inexplicable behaviour unencountered in our house before, wasn’t actually making things worse for my daughter.
Listening to the talks about their work by CAMHS psychiatrist Dr Jane Morris, nurse therapist Maggie Gray, dietician Anne Fyfe, art therapist Helen Wallace, gave me a much clearer picture of where their particular skills came into treatment – as well as a much clearer picture of the frustrations of working with patients with eating disorders.
Feedback from the day, through evaluation forms and email, was overwhelmingly positive; more comments from carers who attended on 24th Nov 07 –
“The pace and content hit all the right buttons for me and meeting with other carers gave me comfort and support – we’re not alone.”
“So many individual stories, yet so many similarities – hearing other people’s stories in the workshops was such a relief, hear that other people struggle too, that there really are no easy answers. No one right answer all the time, it really is about finding what works best with my daughter. And what is right one day might be all wrong the next!”
Major thanks are due to all who contributed to the success of the day, a first in Scotland.
Lessons learned by organising team? – Jan, Ian, Rachel, Jane and Gráinne - More realism needed as to what can be packed into one day! Every talk, session or workshop was so interesting and valuable, it was very hard indeed having to keep moving on, to remember to stick to our planned programme; if one item over-ran, all others afterwards would be affected.
Discussions have already started about possibility of another Scottish ED Carers’ Support Day this year….
NORTH OF SCOTLAND MANAGED CLINICAL NETWORK (MCN) FOR EATING DISORDERS
by Dr Harry Millar
The Health Department in 1999 defined an MCN as “linked groups of health professionals and organisations from primary, secondary and tertiary care, working in a co-ordinated manner, unconstrained by existing profession and Health Board boundaries to ensure equitable provision of high quality, clinically effective services throughout Scotland”. With these laudable aims, the North of Scotland Health Boards (Tayside, Grampian, Highland, Western Isles, Orkney and Shetland) funded in 2006 a part-time Lead Clinician, Manager and Secretary for a regional MCN for Eating Disorders.
Aims
The MCN seeks to drive improvements in inpatient care, supports guideline implementation, will develop clinical information systems and has a key role in co-ordinating training, education and supervision. The MCN is also involved in supporting local health boards with their plans for local services and has been involved in discussions with central planners regarding service developments.
So what does all this mean in practice? The following are some examples.
- Support has been offered to staff at their recently established service in Tayside and specialists from throughout the North of Scotland have been brought together to share their experience.
- A working group, supported by the MCN, is looking at harmonising the use of clinical assessment questionnaires throughout the North of Scotland.
- The MCN has contributed to the work of the National Eating Disorders Education and Training Scotland (NEEATS) group, which is affiliated with SEDIG and is developing a structure for training in Eating Disorders following an approach by NHS Education for Scotland (NES).
- In Grampian, the MCN has been involved in the successful adoption of a computer based records system with the Eating Disorders Service at Royal Cornhill Hospital. There are ambitions to roll this out to other specialist services in the North of Scotland and to install the system in the North of Scotland inpatient unit. This system will also be available to other specialist services in Scotland.
Steering Group
The work of the MCN is overseen by a steering group with representation of a range of different clinical disciplines and management expertise from across the North of Scotland. It relates to the North of Scotland Planning Group through the Director of Planning for NHS Highland and to the Director of Planning for the region, Dr Annie Ingram.
In its first two years, the steering group has spent a lot of time thinking through proposals for improved inpatient care culminating in detailed proposals for an inpatient unit in Aberdeen being developed and agreed by the constituent health boards in February 2008.
In the work plan for the coming year the network will seek to extent its activities more within primary care to try to help raise awareness, knowledge and skills in dealing with eating disorders.
Users and Carers
The network is committed to seeking the views of users and carers on how best to develop services and a number of people have already contributed very helpfully to this process. If any other users and carers wish to be involved in the activities of the network then we would be very pleased to hear from them (contact – linda.keenan@nhs.net)
Dr Harry Millar - Lead Clinician, North of Scotland MCN for Eating Disorders
harry.millar@nhs.net
Linda Keenan – Manager, MCN for Eating Disorders linda.keenan@nhs.net
Rona Walker – Secretary, MCN for Eating Disorders rona.walker@nhs.net
Editor’s note –
And more excellent news – a new NHS in-patient unit is due to open in the north of Scotland in about 9 – 12 months’ time. Watch this space!
New services also in Glasgow…
A new 10 bedded High Dependency Unit for the treatment of Eating Disorders has been opened at the Priory Hospital in Glasgow.
The modern unit has 10 beds and provides specialist inpatient, day patient and outpatient treatment for people suffering from Anorexia, Bulimia and Binge Eating Disorders aged 16 years +, in addition to the 17 bedded general eating disorders unit on site, ensuring that individuals can step down from the HDU to the general unit once their medical and physical symptoms have improved.
The Unit is led by Dr Alex Yellowlees, Consultant Psychiatrist and long standing member of SEDIG, and his multidisciplinary team.
For more information contact AlexYellowlees@prioryhealthcare.com
Research in Scotland – presentations Oct 07
Jean Corr was awarded the Alison Dobson Award for Mental Health by the British Dietetic Association. The funding from this award allowed her to carry out the nutritional study titled ‘An Investigation of 2 methods of dietary assessment in patients with Anorexia Nervosa’.
Jean was interested in finding out if the home dietetic assessment that she does routinely within her work with the Anorexia Nervosa Intensive Treatment Team was more accurate than a dietetic assessment in out patient clinic and she also wondered what patients really thought about having such a detailed assessment at home.
The purpose of this investigation was to compare 2 methods of dietary assessment in participants with Anorexia Nervosa and measure the accuracy of recorded food diaries over a 7 day period. A home based dietetic assessment was compared to a dietary assessment in the out patient clinic. 12 adults with a primary diagnosis of Anorexia Nervosa recorded all food and fluid consumed over a 7-day period. Dietetic assessment at home including observations around meal preparation and mealtimes was compared to standard out patient dietetic assessment. A follow up questionnaire described the participants’ experience and assessed if they found the home dietetic assessment a useful treatment option. Comparison of the 2 methods showed no statistical significance. The follow up questionnaire showed that participants kept a more accurate food diary, found the home assessment more useful and considered home assessment to be a beneficial aspect of their nutritional care. Participants found the increased contact with the dietitian, completing the home assessment and observations in the home to be beneficial, enhancing the traditional method of a time limited session, usually 1 hour in the out patient setting.
It has been demonstrated in this study that the majority of patients complied fully with all aspects of the study and appeared motivated. Along with observation in participants’ home and increased contact with the dietitian over the study period, it could be concluded that patients were able to keep more accurate food diaries as a result of this. This could lead to improved nutritional compliance and an improved therapeutic alliance. Although the quantitative data did not support the comparison of dietary analysis using the two methods, it is apparent that the study procedure lent itself to a much improved estimate of food consumed. It has been reported that there will always be error in dietary assessments (Beaton 1997) and the challenge is to understand, estimate and interpret this information in a useful way.
It has been demonstrated that the majority of participants found the home assessment to be beneficial and it may be worth considering whether a home dietetic assessment could be a useful element of standard out patient treatment as it appears to improve compliance and motivation in recording food diaries, which may in turn improve overall nutritional care.
Jean thanked all patients and their families for allowing her to do this detailed study in their homes.
Professor Bryan Lask spoke on new research
The Ravello Profile: A Global Standard Neuropsychological Assessment Battery in Anorexia Nervosa - A new study investigating the neurobiological basis of Anorexia Nervosa has been planned based on previous research. In this research, it was suggested that the temporal region of the brain may be affected in some patients with Anorexia Nervosa and as a result they may then have some difficulties with certain skills which involve using this part of the brain. It is possible to assess some of these skill deficits using neuropsychological methods such as psychometrics.
More on this in next issue of SEDIG News!
Michelle Conway’s new research -
A Qualitative Study of Recovery from AN and the Role of Psychotherapy
Michelle, a post graduate student at University of Edinburgh, outlined how participants have been recruited through various avenues - including SEDIG members - for her Ph.D research.
Michelle states, “My motivation for undertaking this study comes from working as a psychotherapist in a specialist eating disorder hospital in Scotland. I have found it difficult to know what people who have recovered say about their own recovery process and particularly how psychotherapy helped them.”
Much care is taken in ensuring that those taking part understand why the research is being conducted, what is involved, what the aims are, and most importantly whether participants are fully recovered.
Fully recovered? - A questionnaire as developed to identify the most suitable participants. Participation in the study is not possible for anyone not fully recovered from anorexia, with follow up discussion if necessary to clarify any remaining problem issues with food.
Benefits were identified as offering the opportunity to talk about individual experience of recovery; helping advance knowledge and understanding of the role of psychotherapy in treatment leading to future improvements in treatments and services.
Possible disadvantages were also discussed, such as possibility of stirring up distressing memories. Follow-up support with any difficult issues raised can be offered.
Reassurance on confidentiality is given to all participants. The aim of this study, which has been reviewed by a Multi-Site Research Ethics Committee in Scotland and will be under regular review by supervisors at University of Edinburgh, is “to help the voices of people who have recovered to be heard, and develop further understanding on how psychotherapy aids a person’s recovery from anorexia.”
To further aid participants, Michelle lists several useful phone numbers and support websites, including SEDIG and b-eat on her Information Leaflet for Potential Participants.
It is anticipated that the results of Michelle’s research study will be published in a scientific journal; the results may also be presented at conferences.
For further information, contact Michelle at michelle.conway@fshc.co.uk
And a request from London…
Miriam Grover, IOP, writes about -
An off-line pilot of a web-based intervention for carers of people with anorexia nervosa
Carers of people with anorexia nervosa (AN) have high levels of distress linked to both unmet needs and difficulties in the caring role and thus may inadvertently contribute to maintaining their loved one’s illness. We developed an interactive web-based intervention for carers of people with AN based on a cognitive behavioural model of carer experiences. This was designed to reduce carers’ distress and help them support their relative more effectively though improved understanding of the illness, skills communicating with the sufferer and problem solving. This study is an off-line pilot evaluation of a paper version of the materials developed for the web-intervention prior to on-line testing.
30 carers were recruited and given nine interactive workbooks. All carers were offered brief weekly clinician support (up to 20 minutes per week) by telephone or email.
More carers are being recruited for this study – please contact m.grover@iop.kcl.ac.uk
“Through the use of light-hearted animal analogies, carers are encouraged to recognise and reflect on their own reactions to the illness and to consider these responses may have in maintaining or aggravating the illness. They are encouraged to reflect on their own emotional response in guiding their goal setting and action planning.’
To participate in this project email Pamela.Macdonald@iop.kcl.ac.uk
Editor’s note - With the use of new technology it’s now possible for people living at great distances from research centres to have the opportunities to take part in studies. Please pass on the e-addresses to any carer you know who might like the opportunity of taking part.
Book review from Rosemary Stewart
Counselling for Obesity
Person-Centred Dialogues
A book in the “Living Therapy Series” – Richard Bryant-Jefferies
Radcliffe Publishing Ltd 2005
This book comprises two fictional case studies of person-centred counsellors’ work with obese clients, including some supervision sessions. It reads as described dialogue with explanatory inserts in brackets illuminating points of theory, or reasons for an action or comment being made, being particularly helpful or unhelpful.
The premise is that obesity has causes beyond simple over-eating and that useful work can be done by forming a “therapeutic relationship that will enable the client to experience constructive personality change . . . with a likelihood that it will be in a sustainable way because it is driven by psychological and emotional change . . . within a person-centred therapeutic experience.” There are questions to ponder and discuss at the end of each section, implying that it is primarily intended as a learning tool for counsellors in person-centred training.
The fictitious nature of the material made it hard for me to engage with the book, which I found rather contrived and self-conscious. For a reader to whom the concept of psychological issues behind eating disordered behaviour is new, there may well be value in accessing it in this way.
*Editor’s note – apologies to Rosemary for the delay in including this review, submitted two SEDIG News issues ago and somehow lost in my filing system for months!
“I've compiled a list of Scottish ED services, but this is now 1 year old. I hope to update this at the next SEDIG meeting on 17th April, then I will hand it over to the web designers to put it on the SEDIG web-site.
Anyone wishing to send their new or updated details to me would appreciated –
katypark@prioryhealthcare.com
Thank you all!”
Katy Park
And finally ….
New editor of SEDIG News
Thanks to everyone who has contributed so much to SEDIG News during my three years as editor, and to all those who have offered support and encouragement.
Wonderful to have been a very small part of all the exciting developments in eating disorders over the last few years, especially since the Scottish Health Committee published their strong recommend-ations, and to be able to record them for the last few years!
I’m sure Jan McDonald, who now takes over as new editor, will continue to benefit from the same support. Send items of interesting news from your area to Jan at Chaika05@aol.com
With thanks and very best wishes
Gráinne Smith
|
