F.E.A.S.T's Around The Dinner Table forum

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

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MarcellaUK
NHS England are asking for ideas on research priorities for eating disorders. The particular committee that is asking concentrate on ADULT INPATIENT services but are asking for any ideas. What are YOUR priorities or ideas for research?
You don't have either to be a parent of an adult or to be English to ans
Fiona Marcella UK
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debra18
My idea is that only parents should have the therapy for FBT to get more support about what to do. The child should be seen separately just to be medically monitored. At a healthy weight it should be evaluated what type of therapy might benefit the child.
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sandie
For starters:
Better understanding of relationship between weight gain and relationship with food/ eating disorder thoughts/rigidity.

Can mental health indicators help identify if someone is at optimal weight?

The value of return of menses as indicator of target weight.

A survey of parents on their experience of whether decision-making is collaborative.

Better understanding to inform the use of nutritional supplements ( seems to be lots of variation).

School weight measurement as a tool to identify children who are failing to follow their growth curve - for early identification and intervention.
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debra18
School intervention is a good idea. I also wonder if there could be research on kids identified as skipping lunch? The school should see that. Early intervention is so important.
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scaredmom
Relapse prevention.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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blondie
The factors that contribute to a successful transition from IP to home

Whether it's better to follow a calorie based or exchange based meal plan in recovery

How to best support carers
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melstevUK
Hi Marcella,

As they will be over 18 and likely to be very unwell if they are IP, once they have put enough weight on to be able to function better mentally - I would research the provision of a programme based on educating patients about the nature of eds - the biological predisposition and the impact of lack of nutrition on the brain, so that they patients can understand why they are acting the way they are.  They also need to be educated in understanding that, if they can't eat outside independently and pursue recovery, then they will be back in hospital again.  If they are educated about the difficulty of keeping well but are helped to understand why it is so difficult, this could well lead to better recoveries.

The other thing to research is encouraging one set of patients to work collaboratively with their families, and not allowing them to sideline the families - i.e. educating those patients in the value of support, and discouraging the isolation and wanting to 'prove they can do this on their own' attitude - which is often prevalent in this group of patients.
Believe you can and you're halfway there.
Theodore Roosevelt.
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deenl
I think there is a chronic gap in knowledge around what are the best foods for initial refeeding. Anecdotally, we all feel that a significant portion should come from fats but are proteins for repair just as important and what about carbs to produce glucose to feed the brain? Are any of the vitamins and minerals especially important or is a broad range necessary? Some families take the focus off fruit and veg as they are low in calories and can increase digestive discomfort but I always felt that rebuilding his stores of micronutrients was also important. Was I right? Was I wrong? As I understand it, in the average person vitamin supplements are absorbed by the body differently than in their natural form. But is this true of malnourished people (and I include anyone with any ED here), meaning that multivitamins are a crucial component of recovery? For an illness where malnutrition is an enormous factor, we know remarkably few details about the best way to refeed. It would be lovely to understand how to optimise this aspect.

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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debra18
The definition of recovery.
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tina72
I would love some more research on blood values. Especially on the possible correlation of zinc, B12 and cortisol.
Keep feeding. There is light at the end of the tunnel.
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sandie
Yes to the fats idea. I never heard it from cahms- just ATDT.
also,maybe something on interventions specifically targetting dads as anecdotally main carers are usually mums and is something different needed to address the needs of fathers as carers.
and also action-based research about interventions to minimise impact on siblings and support them to support their ED sibling
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tina72
I would also love to have research on very early signs of the typical AN character in Kindergarten or primary school. Looking back there were SO MANY signs here... perfectionism, OCD, order and symmetrie, picky eating/eating only xy for some weeks and then never again, no overnight stays in other houses, ...
Keep feeding. There is light at the end of the tunnel.
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kazi67
1 research on Discharge weights and likelihood of re-admittance if discharged from IP at lower weight as apposed to discharge at a higher “safer” weight 

only seems to make sense to me to discharge at a higher weight- have a few kg buffer  (allowing for being back into life/real world) as moving around more obviously a few kg more would be better incase a bit comes off

i guess it comes down to $$ and being medically stable 

2 so having a step down program in place 
but also research into having the discharge from this sort of step down program focussed on a good weight too and wether this equates to a smoother recovery
ie: does a higher discharge weight equate to not being re-admitted (revolving door scenario)

so research into HIGHER WEIGHT ON DISCHARGE from a step down program

all this too still probably decided on around $$ but also the patient becoming “stuck” in treatment and not moving on in life ?

Research into wether a good TRANSITION PLAN from discharge from IP to Day program can make it more likely for a patient to continue on their recovery journey more successfully 

3 and also research into having a good TRANSITION PLAN from discharge from Day program to OP and wether this helps or not with relapse (my guess it would)

4 Research on having family support/ family INCLUDED in treatment and the success of having that or not

as we have supported our d the entire journey and it’s still been VERY hard for her,   I can imagine that without family support an individual could find recovery more difficult my d now keeps us out of treatment but we still support her (or she would literally be homeless, let alone not be able to afford her treatment services)

research into this would be very interesting 
and then the results for this to be made available to the treatment centres 

our d now keeps us out of the treatment (even though we do support her 100 percent) if the treatment centres encouraged the patient to include their family it would be interesting to see the results 

it bewilders me why the treatment centre doesn’t  encourage us to be involved 

we just keep paying for everything (hospital cover, medical bills etc etc)

it can become VERY frustrating as a loved one to continually be paying for everything but treated like we don’t matter by the professionals (although we know we do matter!!)

so it would be good to see research and results on this but I guess in my lifetime we arent going to see the results let alone the research into this even happening

5 Research on GOOD support courses for carers and how carers being/feeling supported can help the patient in their recovery 
(Our carers support group told us that basically our kid would never get better
(that wasn’t helpful at all)

6 research into wether having a good safety net for the patient on all areas of the steps of treatment and wether this helps to continue the recovery journey smoothly as possibly 

I think this all seems to be the “norm”? For a child but for adults it’s different 
in a perfect world our kids (child or Y/A) would  be in  GOOD treatment until properly recovered 

surely ensuring good treatment from diagnosis through to recovery saves money for patients/families-carers/insurance companies/and govts  - how about research on this ?

anyway that’s my few ideas on research for adults IP treatment not sure if that’s what your after or not

i know if we got good treatment before my d became an adult then a lot of money would of been saved by all, all round 


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debra18
Research on the use of hobbies in moving towards recovery. 

Can people go back to the sport they did or any sports?
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