Hi there, I am hoping to set up an Eating Disorders treatment project in Derbyshire. Initially, I would like to start a pilot project for the treatment of anorexia. I fully recovered from anorexia and binge eating disorder, and I know from experience how difficult it can be to get effective professional help.
I am proposing to set up a project that could provide a viable alternative to current mainstream approaches if successful.
It would be based in Belper Derbyshire. This small town has excellent road and public transport links and is easily accessible. The initial project would be for between 6 and 12 participants. For the initial project we would only take clients age 16 and over. But if successful then follow up schemes could involve all age groups.
There will be three counsellors for the project(as a minimum) an alternative therapist. Plus there will be support staff, admin staff and a fundraiser. All staff will be paid, and I would like as many staff as possible to have had a mental health problem(preferably an eating disorder) It is virtually impossible for such people to find meaningful employment with responsibility.
We will be forming a Not for profit organisation(NPO) for the project. I already have three clinicians enlisted on the project but still need others. We also need participants. I have already located the premised for the project. Once again it needs work and money to get fit for the intended purpose.
Without funding then the project cannot go forward. It is essential to have an experienced fundraiser as soon as possible. Is there anybody out there who can help with this? Or you may know someone who can help.
I want to create an approach where food and weight gain are not the focus of the project. In my experience weight gain is not an indicator of recovery. This project would be based in the “real world” in a non-clinical setting.
If you are interested in the project then please contact me. If you know someone who may benefit from this project then please get in touch. If you are a fundraiser or know someone please make contact. If you are anorexic and interested in participating in the project, or know someone who may be then please get in touch.
I have discussed this with very experienced clinicians and they really do think that this project can work. As I have said, without funding, the project will not take place. So please, if you can fund raise, then please get in touch. There’s a myriad of fundraising bodies etc and it outside my experience to effectively find the sources and put in a well constructed and professional bid for funding.
I look forward to hearing from you.
My email address is,
itstimetorecover@btinternet.com
or
itstimetorecover@aol.com
Mark
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mark1962fullyrecovered
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Thanks for all your help. We get many here asking for help but when it comes to giving it is a different story.Sad.
Your post makes me feel that I cannot and do not deserve to ask for help here and that I am selfish for doing so simply because I do not have the confidence/knowledge to help others? I'm not sure if that was how you intended it but surely you realise that the majority of people here will be struggling in many ways to help themselves,any of us spend our lives prioritising others over our own needs. I find your post really negative but that could be my interpretation and apologies if I have misinterpreted it.
It was not my intention to have that effect. But there are many people out there with skills and who also know people who could help me. This project will also provide employment for those with mental health problems. it is almost impossible to get meaningful employment when one mental health problems. Not everyone who visits this site is desperately ill. Many are recovered or the parents of someone who is ill. These are people who can help or they know people who can. I find it disheartening that I didn't get a single reply until my follow up post. I have worked on this without pay for over four weeks.It has been hard work, but rewarding. But that doesn't pay the bills. I am doing this because I believe that a new approach is needed. After being on both sides of the fence as a practitioner and patient I know that things must change. When I was incarcerated in an ED unit for 8 months it was so obvious to me what they were doing wrong. It is not intentional, they just don't understand the nature of the problem. And that is because they have never had an ED.
I am sorry to say that we live in a country where many expect things to be given to them on a plate, and without giving anything back. I see this in my private clinic. Potential clients would rather wait a year to see an anonymous counsellor for 6 sessions rather than pay to see me. It is not that they can't afford it, they expect it for nothing.
The list of examples is endless. I paid for my own treatment and got better. If i had sat back and waited for help then none would have come and i wouldn't be here now. This is the real world and there many who visit this site who have the abilities to help me or have contacts who can.
Once again I apologise for how you felt after reading my follow up post. I obviously knew that there was the chance of responses like yours. Maybe I should have written it differently. It is a tough world out there and being ill doesn't preclude us from facing a few home truths. One of the biggest obstacles to recovery is when we face the real world. Current treatments remove us from the world in a way that does more harm than good. This is why relapse rates are so high. I know I have been there before.
I do believe that my project can make a difference. I have therapists on board who feel the same way. We are putting together a treatment package that is so different to what anyone has tried before. Currents treatments do not work for the majority of sufferers. And yet they still get used. The new NICE guidelines that will be coming out, have nothing to say about new approaches. In fact they really don't know what to do or recommend apart from carrying on with the current status quo. They admit that the research is inconclusive. So why isn't anyone trying anything new?
if my new project doesnt get the support from the very people it will be helping then it will fail. It is that simple.
And I make no apologies for saying that.
Excuse my typing, not enough to check through this and too much work to do.
I would just like to illustrate my concerns about current treatments by these examples. When I was in the ED units.The majority of sufferers there were repeat admissions(myself included) One person was on her eighth admission! She was admitted and refeeded. She ate to get out, no other reason. As soon as she was released she immediately recommenced starving and exercising. Then after she had almost starved herself to death she was readmitted. This is not the sufferers fault, absolutely not. This is the fault of the so called specialists. Why did they never consider another unit for this person? Did it never occur to her that the way they treated her was totally useless. They were, in effect, condemning this person to a lifetime of anorexic hell. And never ever questioned themselves. There were other units they could have tried. Or the consultant in charge could have tried something different. But this would have brought attention on her. Questions may have been asked.So she wasted 8 months of treatment every year on this person. A lot of money, and the human cost is incalculable. There was another person there who was a yearly admission.She knew what she was doing, as she had been doing it for 20 years.And no-one ever questioned why she did it.
In all my years of treatment i was never asked why i did what I did. They never attempted to find the trigger.And they were totally indifferent to the "voice" Well you can't give a pill or food to treat it.
In my counselling practice I have treated EDs and in many ways it is heartbreaking. There has to be a better way of treating people than just giving them food and meaningless CBT. There is!
Mark, mark , mark... You can lead a horse to water...I'm sorry you didn't get any support from this forum - truly. I read your post and thought - Excellent! People turn to the medical system because it does work for some. For those that it does not work for, they turn to "other" help. The medical system has one job to do, get seriously nutrition deprived bodies back from the brink. They do that and their job is done. They do not ask, why. Yes it is sad. That is where Counsellors come in - they ask why. Unfortunately the old adage of kissing a lot of toads before you find the prince, is true, of counsellors too!! Please don't give up your dream of helping people with eating disorders. It is a tough gig what you are doing, never forget the same strength that brought you back from your eating disorder, can and will see you succeed in this venture too. Mark you cannot save the world. The people who will benefit from your treatment will find their way to you.
Mark, when the trigger is discovered and management techniques are put in place, the eating disorder is starved of its source but in my experience it has not left. Even if you go through your whole life without another Episode. The management techniques for the trigger(s) kick into the point of auto pilot. That is true recovery. Maybe rewording your strong principles, experiences, frustrations to a softer way might be beneficial in garnering the support you wish for...
Mark, do not forget that people with eating disorders have really low self esteem. I think I am older than you, I am 45. When I was really young (teenager) I thought this eating disorder business would just go away, I could have afforded any old help that I chose, but, I thought it would just go away - why waste the money. Maybe the apathy you see is people just not getting how serios an eating disorder is? ??
Mark you are a passionate man (gathered that much!) Your heart is in the right place! Good luck out there, Julie. xoxo
Just wanted to say that your post is so well worded, I cannot add anything except thanks for putting things so clearly and I too can see the care that both you and Mark have for others. Good luck Mark and thank you Joolzz.
Hey you Unexpected, thank you. Julie xoxo, by the way happy mothers day!!!
I am 52 and yes I do have strong views on the NHS. Simply refeeding people is a complete waste of money. They have a duty to save lives but it doesn't end there. They also have a duty of care and this endures beyond simply filling people full of food. learning to live with anorexia is not the same as recovery. I still have anorexic thoughts, but they don't have any effect on my lifestyle. I don't like the way I look when I stand in front of the mirror, but that does not make me want to go out and self harm(anorexia is self harm)
And anorexics do need to take responsibility for their actions. Until they do this then they can never start to recover.You consider some of comments harsh. But continually refeeding someone so they can leave hospital and do it all over again is abuse in my book. And I have seen this so many times.
The majority of specialist(hoho) NHS ED services will only treat people when their BMI is at a certain point. Here in Derbyshire it was 14!!! Now it is 16. The NHS call anyone with a BMI between 14-17 as moderate anorexia. There is no such thing as moderate anorexia. All anorexia is severe and will get worse the longer it goes untreated. By the time you reach the NHS arbitrary BMI figure your anorexia will have a full grip on you.They say they don't have the resources to treat more sufferers. Maybe if they tried a little more early intervention than waiting until someone is almost dead then maybe there would be more resources. it will cost at least £20000 a month to keep someone in an ED unit. Long term planning has never been in the NHS mindset.
I will not mince my words with the contempt I have for the NHS and their treatment of ED. Client confidentiality prevents me from telling you some of the most appalling horror stories that my clients and parents have been subjected to by the NHS.
You see after the NHS has discharged its responsibility in "treating" their patients, it is left to people like me to pick up the pieces.
If you look at the new NICE revisions to their ED treatment guidance. They have nothing new to add. This is because in the last 10 years nothing new has been tried. There is a complete lack of research. This is not the fault of NICE. I spoke to a GP yesterday about this and he said he felt helpless when he referred someone to the ED service. Because he knows that in the majority of cases the the anorexia treadmill is starting. But this is all he can do because there isn't anything else, and if there was then CCG restrictions would probably prohibit him from send his patients there. He knows that he can get a patient an appointment with a private counsellor the very same day and yet the CCG rules prohibit him from doing so. So, all he can do is have them see someone in six months or a years time for 6 sessions of totally inappropriate therapy. This is all he can do because his hands are completely shackled by his paymasters(CCG) And in six months time, that patient will be much more ill and cost even more to treat. We hear about the effective use of resources in the NHS. There is no such thing. If t did exist then this caring GP would be allowed to do his job properly and much more effectively. There are many many dedicated and caring doctors who are simply prevented by arbitrary rules from doing their job properly.
I don't know if my new approach will work. If we don't get funding then there won't be a project.
I know I can't save the world. But that won't stop me from trying. I saw a former client yesterday and for the first time I saw here being happy. And that is what it is all about. It is not about making money or wanting fame and glory, it is about those special moments that bring a tear to me eye.
I have assembled a like minded altruistic team who are passionate about this project as I am. I started working in the field 25 years ago working with abused children and their families. That was heartbreaking work. I have been on both sides of the fence, care giver and recipient. Anorexia almost claimed my life. All things being equal I shouldn't really be here. I remember vividly those years of absolute torment. The endless nights when I just prayed to die. It was absolute hell for me and my family. And this is what I want to try and prevent others from going through.
i will add that the malaise in the NHS is also reflected in the charitable and voluntary sector. BEAT the UKs leading ED charity refused to mention my project on their website unless I paid them £130 for the privilege. I have asked them if they can give the statistics for in the incidence of anorexia in the UK, and the epidemiology of ED in the UK. That request was completely ignored. In November last year I asked their research officer if he could help me find some potential fund/grant makers or point me to someone/somewhere who could help. two weeks later he sent me four weblinks. One was broken, two sent me to a book costing £75 each and the other was just to a generic website.
So the lack of initiative goes way beyond the NHS.
I would love to find out more of what your approach is going to be to help fellow sufferers I am at my wits end with treatment I have been admitted to units for general mental health problems there was 1ed bed kept so tough if it being used which usually is I know a girl who is constantly admitted refed discharged cycle goes on,I myself have been in this ward staff weren't able to help me at all either werent interested or didn't know how to treat me I overhead an auxiliary nurse saying oh just eat how hard can it be,if only.i eventually was admitted to priory unit only for eating disorder but same old fed me discharged then by time my follow up after discharge I had lost weight gained so cycle goes on.the staff themselves just wanted jobs (not all staff)a lot of agency staff used so felt no one was there long enough to build up relationship to find out why I did what I did,so what now every day is such a struggle yet again been referred back to Ed unit but never helped before so surely this a waste of nhs resources,how many more people going to die before someone listens.i feel I have went on a bit sorry.i am 46years old but feel so old,tired out,what's next?
I have heard some very disturbing stories about the priory in Birmingham. Please send me an email to
itstimetorecover@btinternet.com
I would like to hear more about you. It's not appropriate to discuss these things here. I can assure you that what you tell me is confidential.
The project was formally started yesterday when the constitution was signed. So now we can start to apply for grants and funding. The project is called
"A new way forward. The Derbyshire Eating Disorders Project."
Our mission statement is
“To support and effectively treat Anorexia, giving sufferers the opportunity to deal with their difficulties in a way that enables them to have a future free from their Eating Disorder.”
I look forward to hearing from you and anyone else who would be interested in either taking part in the project as a user or as a staff member. Please send an inquiries to the above email address as I can't discuss personal matters in a open forum. I am sure you understand.
Mark1962fullyrecovered that is so disgusting that happened to you. I'm glad you are still here fighting the good fight, my bet is so is everyone else.
I don't personally know anything about fundraising - apart from just getting out there and asking every business for a grant - it's tax deductible here - anything over $2.00 - manning stalls, sausage sizzle, cake, sunscreen (you'd be surprised how much you make I have noticed organisation's that have started a ground swell movement involve a TV show here to further their message. Maybe that could help with all those registration costs...Possibly I should just shutup! Not sure if I'm allowed to say any of this here!!
Keep knocking on those closed doors - one will open. Sorry if I'm too matter of fact - just one of those practical people,, sorry.
I wish the whole system would change, the ed unis all over uk are rubbish. They are just intreasted in money. I wish there is something that could help with, i want to train as a councollor. there was no funding, and i do not have the money to do this course..I have had anorexia 3 times over and this one on recovery, but sometimes slip.. I have hope for me, but if you need any help. not with money, I can try. i wish i could open a center in berkshire, there is nothing for us here..please let me know if there is any training free, thank you
Thanks for your reply. I wouldn't know about free training, but it may be a good idea to try and get some voluntary work with an organisation that does offer counselling to their clients. The sad thing is that charities and voluntary organisations are very reluctant these days to offer counselling. And another crazy thing is that it is very hard to find paid work as a counsellor when you have had a mental health problem. The NHS rarely offer responsible work to professionals who have been ill themselves.
Sadly I have had to give up on opening my ED project in Derbyshire. Everything was in place. I had the staff, premises etc but it was impossible to get funding. Locally, other mental health charities showed absolutely no interest. They wouldn't even agree to meeting. The national ED charity BEAT were completely uncooperative. I asked their research officer for help in searching for funding and he could not have been more disinterested. Of course they did offer to put the project in their database, as long as we paid £130. I asked them to show a little charity and give us some free or discounted adverts and they absolutely refused.
So I have closed down my counselling practice in Belper and moved everything to Northumberland in the hope of starting the project there. I have working on this without pay since March 2014 and i am not going to give up. The NHS in Newcastle has closed down their ED unit and are sending patients to Glasgow, Sheffield, Leeds, Norwich and London for treatment. That is totally appalling. The County of Northumberland is ideal for the project. We are still a legal entity and have changed our name to the United Kingdom Eating Disorders Project.
But I can only do so much. If I can't get funding up here then I will have no choice but to give up. We only need around £100000. It costs the NHS over £3 million to ineffectively try and treat the same number of people. I must admit to being very surprised at the indifference shown by mental health groups who are supposed to exist for their clients and not for themselves.
We need more counsellors who have had an ED. We know how it feels to be ill and we also know about the freedom that recovery brings. If only we could share those experiences with other sufferers and start to make a difference.
Don't give up on your desire to find what you are looking for. It takes an incredible amount of resilience, will power and dedication to live with an ED. The key is to turn all of that around and use what we have to,
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(gathered that much!) Your heart is in the right place! Good luck out there, Julie. xoxo
