To ask for mumsnet to please help save this young woman

[madeuplovesong44]

m.derbyshiretimes.co.uk/news/health/1m-vow-to-save-starving-emma-1-6575299

She has been denied the funding to access the specialist residential treatment she needs to overcome a devastating combination of anorexia and borderline personality disorder. She is about to be discharged from the acute ward she is in despite being desperately ill. If anyone can donate or think of a way to help raise the profile that would be amazing.

Um not necessarily eighty.... do you not know about the crisis in mental health funding???

On their Facebook page it says that she has been offered alternative NHS care and rejected it.

Emma even said that she wouldn't use community services (as she hasn't got on with them for the past 8 years) and would just kill herself, but their minds are made up.

Agree with eighty - the newspaper has doubtless not printed all the facts - they never do. Their job is to write a story people will read.

I feel for the family, and the girl, but would never donate purely on the basis of something I've read in the paper.

And in any case - if I were to donate, it would be to the organisation, not to an individual. There are so many individuals with heart-rending stories, how do you pick one?

Actually i was aware of the case and this young lady before the newspaper story so my post was based on facts of this individual story. She has been denied funding for the York retreat as she does not meet the criteria for the funding, not for the treatment centre. She has very complex needs as bpd and anorexia are notoriously difficult to treat. The care on offer to her in the community is not adequate for her level of risk. She has been detained in an adult acute ward where she has got worse. Adult acute words are not equipped to deal with this kind of illness. She is to be discharged next week despite feeling desperately suicidal. Its not that she is refusing further help, it is that she feels the community team cant help her.

If anyone is interested, the story is being shown on channel 4 news tonight.

Mumsnet has saved my life when i have felt desperate and now i am desperate to help this lovely young lady. Bpd is a cruel illness, it robs your identity and takes you to the depths of darkness. I have been in her shoes, been on that ward, wanted to die as a way to escape and it is terrifying. It is so relentless and so difficult to move on from.

I know its an unrealistic ask for people to donate but i was hoping someone may have some suggestions on how to help her ot help raise the money.

MadeUp I totally understand why you've started this thread, it's an awful situation, chances are the news tonight will bring about some change for her. I really hope she gets the help she needs.

I'm hoping you're now happy and healthy

I really feel for this poor woman and her family. I would imagine cases such as this are very hard to treat as mental illness is very complicated. It sounds like the NHS is doing what it can though.

I sincerely hope so. My life has been ruined by mental illness, fortunately i have two beautiful children who keep me alive. Everyday is still a battle but its not just about me anymore. Borderline personality disorder is unknown amongst the public and feared amongst most professionals, the care in this country is woefully inadequate. It would be tragic if this woman takes her own life when 160k could put her in a therapeutic community for a year.

I am not trying to be critical of the NHS by the way. My care in the community has been and is exceptional, my care coordinator is part of my family now. I'm sure everyone in this case is doing all they can.

However, like Emma i have had countless admissions when the risk is too high and although necessary they have been really damaging. The local trust just don't have the facilities and professionals to offer the appropriate treatment. If it was a physical illness, it would not be tolerated.

Channel 5 @ 6.30.

madeuplovesong I work in MH and have done for many years. I secured funding for a similar therapeutic community a few years ago and it took an enormous amount of perserverance and a 'grilling' by senior managers at many stages.

That is what HAS to happen and I accepted that (though I was reduced to tears on occasion!). I'm only mentioning this because I know how detailed and rigorous the system is but I also know that funding is not not approved as a cost cutting measure or because people don't care. They have to look at every case on an individual basis and it is not a decision that is taken lightly.

I know enough about 'the system' to know that there are probably many aspects of the decision that the public are unaware of.

You sound fricking awesome! and very caring. BPD is as you rightly said, difficult to treat but as you also said, effective and supportive treatment is able to be received on the NHS.

I really feel for this young lady and her family. It's bloody awful I'm not suggesting I have the answers, just perhaps suggesting a viewpoint from my personal experience.

BPD is a little understood condition and you are correct that the public know little about it and some (by no means all) professionals have some element of 'fear' around it. I am in NO position to suggest anything to you and obviously I don't know you at all but your posts suggest that if you wanted to, you could maybe offer peer-support to others with the condition, I think you'd potentially have a lot to offer (unmumsnetty hugs).

Thank you neverthebride for taking the time to reply. I was an inpatient for 3 months alongside another sufferer who eventually secured a place in a therapeutic community so do have some appreciation of the extensiveness of that process. I'm sure your right that money isn't the only factor but i think if the family can raise enough to receive private care then it may offer some hope to them and for Emma. I am so concerned that she has acted into everything she can think of to get help and is now to be discharged. I'm sure that it will feel like a huge rejection and the families fears will be realised and she will male an attempt on her life again. I wish could help, its so desperate.

Thank you for your compliments but i am definitely not awesome. I have done endless awful things, you certainly wouldnt want me on your case load. Frustratingly i feel now that i have an excellent understanding of my personality disorder but i still struggle with the same overwhelming emotions and unstable moods. I still feel desperately empty inside and struggle to have normal consistent relationships with anyone. I would go into a therapeutic community in a heartbeat.

Just out of interest, do you agree that acute wards are not the place for bpd sufferers?

I would love one day to mentor others or even hold a clinical role. It is estimated that 1% of people suffer with bpd yet it is so misunderstood. Sadly it has become my area of expertise as my uni education and careers were so disrupted/destroyed by my poor mental health. Nothing would give me greater satisfaction than to help other sufferers.

madeup. You ARE awesome and have much more understanding of your issues than many, many people in your situation. I am sure that there is nothing you have ever done that I have not experienced before. I no longer work in acute MH care and work in a much more specialised area now but I am sure that there would be no challenges you could present that wouldn't make me want to have you on my caseload or like you as a person entirely separate to my profession!.

I am sure that Emma will view this as a rejection but as you know, that is a particular issue for people with BPD which cannot be fully attributed to the decision itself.

I agree that adult acute wards are not the best place for people with BPD but services are targeted to the majority. We know (and have clinical evidence to support) that a lot of MH conditions can be treated with medication and psychological therapies and that in psychosis or depression for example; the 'crisis' can be initially treated and the longer term work that is needed can be done in a safe way at home. That isn't the case with BPD and often the 'crisis' persists for many months and is often exacerbated by treatment. The whole 'it gets worse before it gets better' theory which I have seen many, many times. BPD cannot be 'cured' as you are obviously very aware! and the treatment to help someone better manage their condition takes a long, long time.

Acute MH wards are counterproductive in so many of these incidences but it's also extremely difficult to fund long-term placements on the NHS with no real finite length of treatment and no real guarantee that it would actually make a difference to the outcome.

Private units and therapeutic communities make an enormous amount of money from the NHS (and private clients) because they happily take people at the cost of £1000s per week but they offer no more guarantees on length of treatment or successful outcomes. I've seen many service users attend such units and can't say I've ever seen better outcomes. And when people are discharged they have absolutely no obligation to that individual at all (unless they can pay for it) and the responsibility still falls to the NHS.

Honestly, if you can find any organisation or charity or NHS organisation that could use your experience, knowledge and attitude - do it! We need people like you! Xx

I'm about to be assessed for psychotherapy out of area as i have exhausted the therapy options within my mh team. It has already been discussed how i will or wont cope if not accepted. I cant imagine how awful Emma feels to be told no. Its unfair that you have to be stable to access such treatments yet the push as a bpd sufferer is to up the ante with risky behaviour to express your desire for help. I know that hope that help will come is a great way to manage risky behaviour. The danger comes when it feels hopeless and then the 'what is the point' thoughts come into play.

There are differentiation of wards based on age, gender, severity of illness etc, why cant the nhs consider separate wards for affective disorders. They could model them on therapeutic communities, using their rules where self harming behaviour is not tolerated and recovery is the theme. Acute wards have caused me more problems than they have ever solved. U have been sexually assaulted on a ward and given heroin ro give examples! I have also been spoke to appallingly on countless occasions. I think psychosis is so obviously an illness whereas too many professionals dp not understand bpd. The idea that is can be snapped out of or chosen is just ridiculous. Specialist wards would relieve the pressure else where as i know how time consuming i can be, double constant observation for example!!

I would love to use my negative experiences to improve things for other service users but i imagine it would hard to be objective.

Has she ever received specialist inpatient treatment? I wouldn't be surprised if she has had many thousands being spent on her care. There isn't an endless pot funding.

I do wonder if the NHS wasn't paying out enormous amounts for NHS patients to be treated in private units (including therapeutic communities), we MAY have the money to build NHS units on a more 'therapeutic community philosophy.

A lot of NHS approaches are shortsighted in this respect and I agree with that point. I would be behind you 100% if I'd seen therapeutic communities or private units have outstanding outcomes but sadly that hasn't been my personal experience.

Psychotherapy is something that I do feel most people could benefit from however and NHS provision is inadequate (due to lack of properly trained psychotherapists rather than cost). I have suffered from very serious depression and it was something I really could have benefitted from but couldn't access as couldn't pay for it privately on an NHS salary and my need was not great enough to justify NHS funding. Even with all my MH contacts and being willing to see a student therapist I couldn't find anything cheaper I could ever be able to afford!.

I think it will be most likely be really helpful for you and I wish you lots of luck xx

My understanding is that she has had many many inpatient stays but just in acute wards so none that are specialist in her eating or personality disorder. I appreciate that there isn't an unlimited pot of money but what price do you put on someone's life. What do you suggest for people with life long conditions? I have had maybe a year in total as an inpatient at 500 pounds a day, probably 100 cpn visits a year for ten years at god knows what cost, five years of therapy with a clinical psychologist again not cheap i am guessing. It seems very short sighted to suggest community care is a cheaper option. I get what you are saying that the therapeutic community offers no guarantee but at least there is some hope of a better, more tolerable life.

And thank you neverthebride, i hope it is beneficial for the sake of my gorgeous babies more than anything!

I just think you can lead a horse to water but you can't make it drink. I'm just not convinced that it will be as great as they seem to think.

So sad, although at a cost of £1million over three years, it's not surprising why there's not nearly enough places for those who need them. All the money and help in the world won't help this girl if she's not prepared to fight for herself though. Other people can't make her better, only she can do that, with appropriate help obviously but she needs to want to get better, want to live and be prepared to crawl through hell for it.

I don't get the impression from that interview and another one I read that she wants to live and is ready to help herself. I wonder if that was the reason for her rejection?