Mental Health Trusts, Bureaucracy and My Wife. Advice Please
Discussion
Ok, little tough one for me but here goes...
Mrs H18 ENF has been suffering from Anorexia for the last 13 years. She was in and out of the Queen Elizabeth Hospital, Birmingham, during her initial battle with it when she was 17/18 and lived in Aldridge (that bit is important).
For the uninitiated the QE houses one of only 4 High Dependancy Eating disorder units in the country.
She 'recovered' to a weight where she was able to be discharged in 2001 and continued out patient care based at the QE off and on for the following 4 years, possibly 5. At that point the psychiatrist she was seeing retired and no replacement was offered as she had moved house - 1 mile down the road, yet still in Aldridge. Because of the move we were told that we had to see the Eating disorder specialist within the Walsall Mental Health Trust. An appointment was duly booked (eventually) and Mrs H18 ENF went along to meet with the Nurse who told her that there was nothing wrong with her and that was that. No follow up meeting, nothing. Despite the fact that clearly there was something wrong with as she had been steadily losing weight for the period since being an in-patient.
Under duress we got the specialist to see her again and this time she told us that my wife didn't want to get better and to come back to see her when she did!
We like this specialist by this point. She's ace.
Oh no.
Hang on. Sorry, my mistake. No. We don't. She's a nightmare.
And what's worse is that she is the ONLY assistance in the Walsall Mental Health trust trained to work with Eating disorders.
At this point Mrs H18 ENF refuses to ever see her again as she does more harm than good.
This was about 6 years ago, maybe slightly less.
And this is essentially how the position has stayed. Mrs H18 ENF trying to cope with the illness on her own (Family support of course - no professional help) until earlier this year (May) when I came back from about 2 months of working away to discover that she weighed approximately 25 kilos. (3 stone)
This triggered the reaction to get her into full time in-patient care.
Which meant we had to go back to the Walsall Mental Health Trust.
Where we got to see a psychiatrist who didn't specialise in Eating Disorders. So wrote back to the GP saying that yes she had an eating disorder.
Which, in all fairness, we knew. What we needed was a referral back to the QE.
So the GP wrote to the QE stating a recommendation for in patient care.
The QE replied (3 weeks later) that Mrs H18 ENF needed to be seen by the Eating disorder team in Walsall before she could be admitted for specialist care. This meant seeing the Specialist again... you can see where this is going right?
Now let's imagine that I don't deal with bureaucracy well, especially when I have a wife that is essentially see through. So I bypassed the red tape and went to the QE and refused to leave until she was admitted.
She was admitted.
However now we have a new problem.
The QE are now saying that while the ONLY high dependancy eating disorder unit for 110 miles will see her as an IN patient, they now won't see her as an OUT patient. They say that upon being discharged we must go back to the Walsall Mental Health Trust.
We have clearly pointed out the issues with this scenario and the QE have agreed that if the working relationship between the Walsall Mental Health Trust Specialist and my wife is un-workable then perhaps a specialist could be found from a different West Midlands area to continue her care.
They have agreed in principle that we may be able to find someone from Sandwell or Dudley to step in. But that raised the question that if care can be 'farmed out' to Sandwell & Dudley then why can it not be farmed out to the QE...? The response to this was that it is due to finances and so it is extremely unlikely.
Finances are not a primary concern of mine currently when it comes to getting the best treatment...
So how do we best approach this?
Mrs H18 ENF is currently working with a psychologist at the QE who she gets on with and feels she can genuinely make some progress with. The danger being that this will stop as soon as she becomes well enough to be an out patient and will then have to start all over again when she moves trusts.
What we want is for her to have a continuation of care, which with a psychological illness I would have said is more important than most? But this is not a speciality of mine.
So Pistonheads team... how do we achieve this... anyone know anything? Any suggestions...
Thanks for reading this... just seen how long it is.
Mrs H18 ENF has been suffering from Anorexia for the last 13 years. She was in and out of the Queen Elizabeth Hospital, Birmingham, during her initial battle with it when she was 17/18 and lived in Aldridge (that bit is important).
For the uninitiated the QE houses one of only 4 High Dependancy Eating disorder units in the country.
She 'recovered' to a weight where she was able to be discharged in 2001 and continued out patient care based at the QE off and on for the following 4 years, possibly 5. At that point the psychiatrist she was seeing retired and no replacement was offered as she had moved house - 1 mile down the road, yet still in Aldridge. Because of the move we were told that we had to see the Eating disorder specialist within the Walsall Mental Health Trust. An appointment was duly booked (eventually) and Mrs H18 ENF went along to meet with the Nurse who told her that there was nothing wrong with her and that was that. No follow up meeting, nothing. Despite the fact that clearly there was something wrong with as she had been steadily losing weight for the period since being an in-patient.
Under duress we got the specialist to see her again and this time she told us that my wife didn't want to get better and to come back to see her when she did!
We like this specialist by this point. She's ace.
Oh no.
Hang on. Sorry, my mistake. No. We don't. She's a nightmare.
And what's worse is that she is the ONLY assistance in the Walsall Mental Health trust trained to work with Eating disorders.
At this point Mrs H18 ENF refuses to ever see her again as she does more harm than good.
This was about 6 years ago, maybe slightly less.
And this is essentially how the position has stayed. Mrs H18 ENF trying to cope with the illness on her own (Family support of course - no professional help) until earlier this year (May) when I came back from about 2 months of working away to discover that she weighed approximately 25 kilos. (3 stone)
This triggered the reaction to get her into full time in-patient care.
Which meant we had to go back to the Walsall Mental Health Trust.
Where we got to see a psychiatrist who didn't specialise in Eating Disorders. So wrote back to the GP saying that yes she had an eating disorder.
Which, in all fairness, we knew. What we needed was a referral back to the QE.
So the GP wrote to the QE stating a recommendation for in patient care.
The QE replied (3 weeks later) that Mrs H18 ENF needed to be seen by the Eating disorder team in Walsall before she could be admitted for specialist care. This meant seeing the Specialist again... you can see where this is going right?
Now let's imagine that I don't deal with bureaucracy well, especially when I have a wife that is essentially see through. So I bypassed the red tape and went to the QE and refused to leave until she was admitted.
She was admitted.
However now we have a new problem.
The QE are now saying that while the ONLY high dependancy eating disorder unit for 110 miles will see her as an IN patient, they now won't see her as an OUT patient. They say that upon being discharged we must go back to the Walsall Mental Health Trust.
We have clearly pointed out the issues with this scenario and the QE have agreed that if the working relationship between the Walsall Mental Health Trust Specialist and my wife is un-workable then perhaps a specialist could be found from a different West Midlands area to continue her care.
They have agreed in principle that we may be able to find someone from Sandwell or Dudley to step in. But that raised the question that if care can be 'farmed out' to Sandwell & Dudley then why can it not be farmed out to the QE...? The response to this was that it is due to finances and so it is extremely unlikely.
Finances are not a primary concern of mine currently when it comes to getting the best treatment...
So how do we best approach this?
Mrs H18 ENF is currently working with a psychologist at the QE who she gets on with and feels she can genuinely make some progress with. The danger being that this will stop as soon as she becomes well enough to be an out patient and will then have to start all over again when she moves trusts.
What we want is for her to have a continuation of care, which with a psychological illness I would have said is more important than most? But this is not a speciality of mine.
So Pistonheads team... how do we achieve this... anyone know anything? Any suggestions...
Thanks for reading this... just seen how long it is.
Eating disorder services are commissioned by the Specialised Commissioning Group http://www.wmsc.nhs.uk/specialised-services/commis...
They will have worked with local clinicians to develop the pathway of care your wife is experiencing. I would recommend getting in contact with them and explaining your predicament and ask them for advice about the best way to access a different specialist.
Contact details here:
3rd Floor, King's House, 127 Hagley Road, Birmingham B16 8LD
Tel: 0121 695 2369
Good luck.
sorry to hear that, not good, but there is one thing i am wondering.
I am 5 foot 7, and i was really really ill a while ago and went down to 6 stone, and was all but skin an bones, (apart from my legs for some reason, they were still fairly muscular) how tall is your wife?
or is she just very small build?
i dont mean to come across as a t
t, as you might think, just i dont really know how someone could be 3 stone and not be dead.
on another note, as you said she was your wife, you should know what her favourate food is, what I would do is make sure there is lots of her favorate food stuffs in the house all the time, she should be eating something at least.
or I could be completely wrong, and just tell me to shut up, most people do.
I am 5 foot 7, and i was really really ill a while ago and went down to 6 stone, and was all but skin an bones, (apart from my legs for some reason, they were still fairly muscular) how tall is your wife?
or is she just very small build?
i dont mean to come across as a t
t, as you might think, just i dont really know how someone could be 3 stone and not be dead.on another note, as you said she was your wife, you should know what her favourate food is, what I would do is make sure there is lots of her favorate food stuffs in the house all the time, she should be eating something at least.
or I could be completely wrong, and just tell me to shut up, most people do.
Edited by Slink on Thursday 11th October 21:42
H18 ENF said:
when I came back from about 2 months of working away to discover that she weighed approximately 25 kilos. (3 stone)
That's my Target Weight Loss. If I could GIVE her my weight loss I would. That is the problem with mental health, it's completely bonkers. And I mean that as sincerely as I can. "Normal" People can't understand how "other" people can get so confused with reality. Like me not believing I was overweight, there are 100000's of people who will kill themselves through lack of exercise and excessive intake, it just takes longer I think. Same madness. I feel your pain.
I can't help with the paperwork, but might I suggest MIND and CAB and your MP as starters.
Wifey trained at QE
AlfaPapa said:
Eating disorder services are commissioned by the Specialised Commissioning Group http://www.wmsc.nhs.uk/specialised-services/commis...
They will have worked with local clinicians to develop the pathway of care your wife is experiencing. I would recommend getting in contact with them and explaining your predicament and ask them for advice about the best way to access a different specialist.
Contact details here:
3rd Floor, King's House, 127 Hagley Road, Birmingham B16 8LD
Tel: 0121 695 2369
Good luck.
Thank you AlfaPapa - good advice there thanks!They will have worked with local clinicians to develop the pathway of care your wife is experiencing. I would recommend getting in contact with them and explaining your predicament and ask them for advice about the best way to access a different specialist.
Contact details here:
3rd Floor, King's House, 127 Hagley Road, Birmingham B16 8LD
Tel: 0121 695 2369
Good luck.
I am reading these at available opportunity but not always able to reply, but sincerely thank you for taking the time to help.
Kerrist. What a horrific situation.
I'd wonder about when the right time would be to make preliminary contact with a lawyer - emphatically NOT to do anything litigious at this stage but literally just to make contact, to find out the hows and whens if you do reach the point that legal stuff becomes necessary.
I read the recent Court of Protection ruling about the woman with anorexia who'd been moved onto palliative care by her local hospital - the judge had some very strongly worded indeed things to say about how she'd been treated, opportunities missed, the fact that she had already been moved onto palliative care before the Court of Protection was involved... it illuminated a lot about the failings of the NHS as it applies to people with severe eating disorders, and hopefully will be the catalyst for improvement eventually. The lady in the ruling survived and is now receiving appropriate treatment btw.
All the very very best to you and your mrs. She's very fortunate to have you to fight her corner.
I'd wonder about when the right time would be to make preliminary contact with a lawyer - emphatically NOT to do anything litigious at this stage but literally just to make contact, to find out the hows and whens if you do reach the point that legal stuff becomes necessary.
I read the recent Court of Protection ruling about the woman with anorexia who'd been moved onto palliative care by her local hospital - the judge had some very strongly worded indeed things to say about how she'd been treated, opportunities missed, the fact that she had already been moved onto palliative care before the Court of Protection was involved... it illuminated a lot about the failings of the NHS as it applies to people with severe eating disorders, and hopefully will be the catalyst for improvement eventually. The lady in the ruling survived and is now receiving appropriate treatment btw.
All the very very best to you and your mrs. She's very fortunate to have you to fight her corner.
The commissioning team are without a doubt, the first port of call.
They should be independent and act fairly. They'll also know exactly what needs to be done or can be done to ensure patients receive the treatment they need.
If you have any problems with them OP, drop me a PM and I'll be more than happy to follow up with you.
They should be independent and act fairly. They'll also know exactly what needs to be done or can be done to ensure patients receive the treatment they need.
If you have any problems with them OP, drop me a PM and I'll be more than happy to follow up with you.
I hope you get the outcome you're seeking - it took us a long time and a lot of persistence to get my daughter's CF care based in the hospital we wanted (the one that looks after all her other conditions) rather than our (slightly more) local (by 5 minutes driving) hospital who were next to useless in many respects.
The only nugget of advice I can share with you is that official complaints carry more weight than phone calls and persistence until you come into contact with decision makers is what's needed.
The only nugget of advice I can share with you is that official complaints carry more weight than phone calls and persistence until you come into contact with decision makers is what's needed.
As has been said speak to the commissioning team.
I can understand the QEs reluctance to keep people under their care for Out patient care if they are not being funded to do so, the risk being that they may end up with far more patients than their OP service is funded for. This is a problem that many tertiary centres face unless they are specifically funded for the continuing care of their patients - the problem being that in the case of eating disorders there are OP services funded locally , it's just the IP bit that is the tertiary service.
I can understand the QEs reluctance to keep people under their care for Out patient care if they are not being funded to do so, the risk being that they may end up with far more patients than their OP service is funded for. This is a problem that many tertiary centres face unless they are specifically funded for the continuing care of their patients - the problem being that in the case of eating disorders there are OP services funded locally , it's just the IP bit that is the tertiary service.
dreamer75 said:
I know this sounds a bit mad but the situation is bonkers - could you rent a v cheap bedsit in the catchment area of the QE, and use it as your postal address, meaning your wife is then back under their umbrella?
A studio or room share or something?
That was my initial reaction too - get an address IN the catchment area, be it a friend, relative, old neighbour, a friendly PHer, even some OAP whose door you knock on & offer them £50/month for them to forward mail.A studio or room share or something?
The system is bucking you, so buck the system.
And Good Luck!
ali_kat said:
That was my initial reaction too - get an address IN the catchment area, be it a friend, relative, old neighbour, a friendly PHer, even some OAP whose door you knock on & offer them £50/month for them to forward mail.
The system is bucking you, so buck the system.
And Good Luck!
Yep, fortunately my Mum and Dad live inside the catchment area so if that falls to be the only possibility then we will re-register her there.The system is bucking you, so buck the system.
And Good Luck!
As if going through an illness like this isn't traumatic enough you then have to jump through hoops while going through the system aswell just to receive a decent level of continuity of care!
In case anyone is interested Mrs H18 ENF has started up her own blog which she hopes to be not only useful for her but also for anyone else going through anything similar.
http://www.poundofcheese.blogspot.co.uk
Just don't dare correct her spelling &/or grammar...
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