young man with BN - how can I help?

[tippytoesy]

My son has bulimia nervosa. It is serious, but he does not meet the criteria for ED services. He has underlying MH issues, but these are never addressed. He will receive a short series of appointments, then be discharged.

He has no employment and no friends. He stopped attending school at 13 due to GAD and any outreach services for him stopped when he reached 16. He is now 23.

He cries every day, but every day he exercises beyond endurance or binges and vomits all day. In fact he B and Vs all day, every day now.

I restrict money, but he takes my card and also eats anything in the house. I constantly put in requests for the GP to see him, and this generates a phone call in three weeks time.

I have told the GP myself that I fear for my son's life, and I cannot control the situation. I am constantly short of money through this, I can never be sure there will be food in the house., I work from home and the constant bulimic activities affect my performance.

I just feel lost because there are simply no services and no help.

What can I do?

I'm really sorry to hear he is struggling so much. Why would his difficulties not meet the referral for the ED service? Has a referral been tried? Sometimes you have to be persistent

Hello,

Thank you for replying. The ED services have a strict criteria where we live. It is based on BMI. A person from the ED team saw my son at the end of last year and said he does not meet the criteria for their services.

https://www.beateatingdisorders.org.uk/get-information-and-support/get-help-for-myself/i-need-support-now/

try these guys for some guidance if you haven’t already xx

What about other therapy or mental health services in your area? Often you can self refer for therapy or counselling. That would be better than nothing and might help his overall mental health, which in turn might help him to make changes around his relationship with food and his body

Thank you. We (I) submit requests for help to the GP (first point of referral) about every two or three weeks. I do not want to make generalisations, but the mental health services in our area are stretched to the point where they seem to be non-existent.

My son has a social worker, and I have tried asking for help to support him engaging in society. There was a meeting two months ago, and then the worker said there was nothing they could do, but left some mindfulness web links.

That's awful re overstretched services. Don't give up, keep asking for help. Could you contact your local MP?

Please can I ask for tips on the right things to say and do?

Are you the OP?

No, I am not Supersimkin7. However, I had some useful advice about dos and don'ts with EDS from BEAT. Indeed, I had some excellent counselling sessions with BEAT as a carer for someone with an ED. We worked through a book, which again had some great advice, and it was good to talk to someone.

Yet, although getting help to help a loved one is incredibly useful, a lot of the advice seemed to be aimed at a more 'traditional' family setting, with a parent/child relationship that was perhaps not appropriate in our situation, although I do have a lot of respect for the New Maudsley Approach (summarised below)

The New Maudsley Approach – A resource for professionals and carers of people with eating disorders

The other factors that complicate our situation is that I had a profound ED as a teenager and young woman, In fact it is almost 50 years since I first went into an adolescent unit with AN (I am in my early sixties). The treatment in those days was brutal, and society was a lot less understanding. Therefore, when considering what to say or do, I want to protect my son from negative judgement,, and diagnostic overshadowing (seeing nothing but the ED) that I experienced. My previous experience does mean, however, that I am petrified my son is going to die (because I nearly died on several occasions) and that I have to revisit something (including some not so nice memories) that I thought I had put behind me over thirty years ago.

The other factors are that my son has complex mental health and additional needs. His father and brother are both autistic and have diagnoses of schizophrenia. They live in residential care (father) and supported living (brother). They are lovely, gentle people, but they cannot support my son through this because they have their own mental struggles to deal with. Unfortunately, we have no real informal network of support, although I am trying to see if there are any support groups, voluntary groups or other groups that my son could access. So far, he refuses or is unable to access anything.

I apologise for the ramble.

Thanks so much. I was asking for help
too Detective Constable @TinyMouseTheatre

This sounds unbearable. What does the GP say you should do? Do you feel able to ask them what they would do if he was their son?
I once asked my GP a similar question (not ED related) and they gave me a very honest answer which made me feel a bit more understood.

'What does the GP say you should do? Do you feel able to ask them what they would do if he was their son?'

This is a really good question and the answer relates back to my earlier statement that the mental health services in this country/my area are broken. The GP refers my son to the MH team and/or to the Living Well team (a team who help people with applications, access to support groups and so on). The MH team are very restricted with respect to the services they can offer. The services are time-limited and so far, have made little impact on my son's life because they do not continue long enough for him to truly engage.

Yet the situation is difficult, and I can really empathise with professionals who do not quite know how to respond to my son. He is too 'capable' for some of the services supplied by adult social care. He can drive, he can take care of his physical needs and he is highly articulate. He does not meet the rigid criteria for eating disorder services, and he does not appear to be in mental health crisis. That is to say, when he talks to professionals, he seems to have good insight and he laughs and jokes with them. Yet he has masked his problems since he was a small child, partly because he lived with two very fragile individuals throughout his formative years.

My hope is that he can survive until he manages to engage with something that will help him gain some self esteem. In my case, this came through study and, later, a career, but there are other opportunities. We just need help to find these, and my son needs help to engage.

How old is your son? I can’t imagine what you’re going through, but I have been the young person with severe BN. In my case I was an inpatient due to severe SH. What stood out to me was that his dad and brother are autistic. Is it possible this son is also? I got a diagnosis of adhd and autism in the last year and I’m nearly 40, and if I’d have known earlier I can’t help feel my life would be different. The only thing I can suggest is to push and push constantly with GP and MH services. Are you in a position to pay for private treatment even in the short term? The only thing that helped me was finishing school (but sounds like your son is in adulthood?) as I think my ED was due to autistic burnout. Not therapy helped, neither did inpatient care as it was just more stimuli that was overwhelming me more and more.

Hello Inmyonsie. Thank you for sharing your experience. My son is 23. He has been referred for assessment for autism/ADHD, and is apparently a high priority, due to his MH difficulties, which are almost certainly impacted by neurodiversity. However, the assessment could still be many months away.

I think you are absolutely correct. Because the services are so stretched, we need to keep contacting them. Unfortunately, I am not in a position to afford private services.

You say you have respect for the New Maudsley method. Have you done any of the workshops? Jenny Langley is doing other things until April. Her workshops would be of interest to you, including the autism. She also does a carers meeting through zoom monthly. You can also do the workshop through the Charlie Waller trust with others before April. Or in April with Jenny. https://www.charliewaller.org/what-we-offer/eating-disorder-workshops-for-parents-and-carers

@Mummyoflittledragon Thank you. No I have not done the workshops and I will follow the link. The Zoom meetings would be interesting too.

I just wish there was some way of finding something that my son would engage with. Yet, helping ourselves to help those for whom we care is a positive move.