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Hebrides

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Reply with quote  #1 
I don't want to repeat my post on my other thread, but wanted to flag up that we are at a point of being encouraged to talk to the media (the Guardian [newspaper] specifically). Our D is 18+ but still stuck on an adolescent ward because there are currently no appropriate beds anywhere in the UK.

We are supported by our home team, NHS managers, our MP - and now have the involvement of the shadow minister for mental health. Her team have close links with the Guardian's health editor and are happy to support us if we decide to talk to the media. We have reservations, but would be grateful to hear from those of you who have been down this route. What would your advice be? Were you able to keep anonymity? Were you able to have sight of articles before they were published? How do you weigh up the pros and cons? Would you have concerns about her story being "out there" years down the line, when she is (hopefully) recovered and applying for jobs? We have talked a fair bit with D about this, and she has consistently said she has no objections - I think she is keen to highlight the flaws in the system and the dire lack of inpatient bedsnot just for our family's sake, but for others in the same awful situation, but I'm not totally sure she has thought hard about how it might feel to know everyone she knows could potentially read her story...

We are waiting for a reply from the Health Secretary's office, which they have promised by 14 December. Our gut feeling is to wait until we receive that reply before talking to the paper.

Thoughts please!

xx

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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
deenl

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Reply with quote  #2 
Hi Hebredies,

It just sucks that you even have to consider this. I have no great advice as I think it is probably dependent on the facts of each and every case. I did immediately think of floating and wondered if you had thought to email her back channel to discuss what the effects were when she did this a few years ago.

Wishing you strength and courage. 

D

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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, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • 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. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
Foodsupport_AUS

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Reply with quote  #3 
I am so sorry that you have to continue to struggle to look for care for your daughter, and that the health system seems to be letting you down. We had to go down the path of contacting various politicians and eventually were put in contact with the State Psychiatrist who did offer some assistance for care funding although limited. My experience is that politicians are keen to keep things out of the media which works well for anonymity though it probably does not help to change the system. 

There are some guidelines on the FEAST website along with some links that may be worth reviewing. http://www.feast-ed.org/?page=MemberInterviews

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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
mjkz

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Reply with quote  #4 
What do you think will happen by going public?  I think defining your goals would be a very important first step.  If there are no beds, going public will make people aware of the lack but I don't think that is a secret at this point.  I don't know that it would help you get a bed if there are none.  If it is a matter of funding, I think going public would help you get the funding you need.

I think you mentioned at one point having other children so you could go public without naming her specifically which could help give her some anonymity in the future if she was not so keen on you having gone forward with the story.

Another thing to think about is the fact that your daughter is in different position than just needing care and there not being a bed. She isn't eligible for most beds because she is on a section which could lead people to wonder if she wants help so much, why is she needing to be on a section?

I know with Floating, her daughter couldn't get funding to get a bed which is why they went public.  Her psychiatrist was giving her palliative care only and not letting her have access to the beds that were designated ED beds in the private or public mental health sector.  In the end, it was successful in getting her treatment in Ireland and the UK but I don't know that anything is any better there because she checked herself out of treatment in Ireland and the UK hospital sent her home way too fast and against her family's wishes.

I don't have any idea what the right answer is for you honestly Heb.  I'm just throwing out thoughts as they come to me.  I'm all for open and honest dialog around mental health issues so when we've had the opportunity to share our story, we have.  The questions around appropriate programs came up often with my daughter and was the hardest to explain which is the only reason I mention it.  I do understand 100% and opening up about it will definitely help other people understand but is she is any kind of position right now to help others understand?  Her effort would be better directed I think towards working on her role in what she could do to get herself bed in a program and maybe even getting off section.

I'm so sorry you are even having to consider this.  My thoughts and prayers are with you and your family.
Hebrides

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Reply with quote  #5 
Thanks, Deenl - I did think of Floating too, and will get in touch with her.

Foodsupport - brilliant signposting, thank you! Lots of useful advice there, both for families and for journalists, and I would certainly pass BEAT's guidelines on to any journalist we may contact.

Mjkz - lots of good points, thank you! I think our aim would be two-fold; if the response from the Health Secretary is unhelpful, maybe going to the press might increase the pressure on someone, somewhere to find a suitable bed. But I think it's also about advocating for other families in similar circumstances; there have been recent articles in the UK press about initial waiting times for ED treatment, increased funding for community ED services, patients being placed a long way from home because of shortage of beds etc - and I guess we would want to add to that body of knowledge and awareness about a system that is not working for some patients ie being stuck at this point of transition from young person to adult. I agree absolutely that d is not in a place at the moment to help others and would not expect or want her to be in direct contact with journalists; when we have talked with her she has said she is ok with us talking on her behalf. I'm very much aware our perspective as parents will be different from hers in many ways, but deep down I hope there is something in her that knows she needs to recover, even though she is unable to acknowledge or express it. It would be fantastic if she were able to manage to make changes that would open other doors, or get off her section - a few days ago she said "no ED unit will take me because they can't manage the risks" and there are definitely times when it feels like she is sabotaging everything that could possibly help her move forward. Ugh.

xx

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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
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